I was finally diagnosed after 30 years of being told it was fibromyalgia or laughed at even my husband of 35 years never supported the fibromyalgia. I’ve known now for a month and a half. I have not worked in thirteen years. Lost my self. Now I’m on the walls protocol for a month. I am 54. I feel like there’s no time left now to start over it has been crazy. I have no respect or care for doctors. Research on my own is still the only way to help myself. Thank you for making this. I denied the drugs from the neurologist. Going for the diet 👍
The Wahls diet is a great choice .. can only help! Hang in, move as much as possible, and I hope you feel better. I'm 6 years in remission now on. the diet. be well
To laina I had a story like yours no help doctor laughed I haven't returned and do the best I can I was told at age 50 that I have fibro has been a living hell cold shots affected me very sever my doctor just didn't understand I wish you lots of kindness bless you
I’ve been told I have fibromyalgia for years but I have some things that most people I know who haven’t had it, swallowing problems and I’ve had the double vision everything points to it then I’m older and have some of the symptoms of aging as well as other things that are more serious from aging but they don’t really try to find out why I feel better in the winter & living in florida is hell
Thank you for this. I was recently diagnosed but have had symptoms for a long time. It's something no one understands and I get so uncomfortable talking about it because of that. People's responses are....really annoying. Being able to come here and hear other people that know exactly what I'm feeling is so relieving. Bless you in your journey and thank you again.
Like you, I've found all the various "My MS Story" videos to be incredibly valuable. There are just so many different experiences with this disease. Take good care!
TheLaney Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
I know what you mean. People either say I know someone who has MS and they have had it for 20 years and are doing well or I know someone who has MS and they are in a wheelchair or just don't know what to say. Only we can understand one another. We need to stick together and support one another.
agree 100%. getting a diagnosis is a trial.. a long trial.. many doctors, much money spent... Bless this man and all who share their stories and support. MS SUCKS (I hate it) but am trying to stay positive as I lose mobility.
I’m so glad I came across your story. I have so many similarities to this. Initially, my diagnosis was hard to accept. Now. I’m in a phase where I’m just so thankful to finally know what’s wrong with me. I now know that I’m not crazy, but there is a reason why my body has been wacky for the past five years.
Hard pill to swallow but as someone with RRMS at least you have a name to the inconvenient symptoms. Strange but have a friend diagnosed with MS but then was proven to be fibromyalgia. I also have a friend who is JC*, she is taking Techfidsra and once past the pesky fecal incontinent scares says the pill treatment works for her. Nutso these autoimmune diseases :( Hang onto this rollercoaster ride :) Peace&many blessings, Annette
We have very similar stories and I hate to say this , don't take it wrong , but it's good to know I'm not alone with the way I felt something was just not right , for years. My ms specialist is in Nebraska where I live and like you as soon as I saw her, she knew right away I had ms. I'm fortunate to have her on my side.
My Mom had MS for 62 years, and somehow learned to live with severe disability. She never had the double vision symptom. It took her 10 years to get diagnosed and by then she was in a wheelchair. She never ever wanted to talk about it, or read about it, or think of the future. Literature from the MS society would arrive in the mail and she'd promptly throw it in the trash. Both her sisters had it but were ultimately normal their entire lives because of fewer attacks. The key is to not get stressed. I could see the mind body connection very very clearly.
The physical symptoms are tough but the mental fog and depression is doing me in.. Still waiting for diagnosis...had these problems for years but has progressed rapidly
I guess there are a lot of us Hopefully that doctor from Australia can do something with that drug he is working on Where it can reverse the damage that MS caused Dr Steven Petratos
Thank you for sharing your story! Your video is the first "My MS Story" I've ever watched and I found it helpful, inspiring, and informative. Fyi: I've never commented on anyone's TH-cam video before. That's how much I really appreciated this. Best of luck to you and I hope everything is still going well.
Wow, man ... I'm honored! Thanks for checking out the video. When I first discovered all of these "My MS Story" videos, I found a lot that I really liked ... and continue to find them. I have been making annual updates on this channel, in case you're interested. Be well! th-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html?view_as=subscriber
Thank you Spencer. I’ve been following your TH-cam videos. Great job! I’ve had MS for 21 years, just a little longer than you. I’ve done the same as far as taking the DMD’s. I don’t judge or downplay others as they do work for some. I follow a diet of fruits, veggies, fish and chicken. Low sugar and sodium. Lots of exercise, yoga, chiropractic care and daily meditation.
Cool to hear that we're doing similar things! I'm also some fish and chicken now ... but meditation is something I could get better at. Be well! Thanks for reaching out
I knew for 25 years that something was seriously wrong. Many doctors, no diagnosis. Finally in 2015, I went to a new FP doc and she knew right away. Her mom had MS. No one should have to fight that long for a diagnosis.
And I thought I had to wait a long time -- you went even longer. Most importantly I hope you're doing well. Keeping the inflammation of MS down makes all the difference
I have lupus and ms brought on by lupus. I have macular degeneration . I can't have ms treatment and I'm ok with that. My body is a mess mostly because I've been wrecked by chemo used to treat lupus. Stay clean in the mind and stay as stress free as you can. I can't have sun exposure but I have b 12 injections. I have sjogrens which means hot cold is hyper and raynaudes does this to . Lord knows it's hard but my strength is my son his new wife and my fpgrandson keep smiling because life is so crazy you just have to smile xoxox molly from,Sydney Australia xoxoxo
Molly Mayor Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
This speaks to me in so many ways. Thank you for your bravery to post this. I can't watch the whole thing yet because I am still processing the first couple minutes.
Thank you for sharing your story. A very good friend of mine hasn't been diagnosed with MS yet but she has the numbing, tingling, migraines, lethargic, she gets off balance, etc They previously spotted lesions on her brain years ago but she didn't ever go back to the doctor for further testing. (She didn't want to face her fears.) But due to her condition advancing, she is going to have a MRI tomorrow and get to a confirmed diagnosis. I am trying to learn as much about MS as I can to support her, should she be diagnosed with it. I believe that knowledge has power.
She's very lucky to have your help and support! The MRI should tell her doctors a lot, but it's just one test and doesn't always reveal everything. Also keep in mind that some people with MS need MRIs on the brain and spine to show lesions, and the MRI needs to be powerful enough to produce clear images (3 Tesla is pretty good). I'm wishing her the best of luck! If she does end up having MS, I'm guessing the doctors will push the medications pretty strongly. Note that many of us don't take meds and are doing very well ... there are many options for treatment! Take care
Just want to first thank you so very much for this video. I am so glad I came across it. I am 39 years old and I am experiencing almost exactly the same as you have described in your video. Had odd symptoms for years off and on and dealing with severe migraines. Put things off as just weird or just symptoms from my migraines up until recently when things started getting much worse. I am now just in the process of all the testing with a neurologist. I have so many of the MS symptoms and I am praying it doesn't take so long as many to get diagnosed. You are very positive, informational and inspiring. Keep doing what your doing. This video has really given me hope and help in keeping my head up for the fight ahead of me. Thank you again.
Wow, thank you for the kind words ... I’m hoping things improve for you soon. Since posting this my health has held steady and I’m very hopeful. Check out the other videos in this playlist for annual updates ... take care!
Hi, Katie! How are you doing now? I'd been suffering from migraines for years. I've been told by otoneurologist that migraine kills brain cells in different areas due to ischemia and has almost same impact as MS does.
I’m 65 and started noticing symptoms in my 30’s. I told several doctors trying to get tested. One doctor even said l didn’t know what my own body was doing. I finally got a doctor to test me but he said I was to old to all of a sudden having symptoms. He was stunned when I explained about starting to have symptoms and no one tested me. He said I was right all those years. I’m lucky, I didn’t have any lession on my brain. Mentally I’m just relieved to finally have a doctor who finally tested me.
Wow, our stories are remarkably similar. Good to hear from you and hang in there! I'm almost 50 now and have had it over 20 years ... I'm fortunate to be doing pretty well despite all the screw ups by the docs I've seen.
Thank you for posting your story, it really hit home for me. The "limbo" period is difficult as well as the Neurologists and Dr. that tell us we absolutely don't have it yet you know with all the symptoms that it very well could be. Thank you so much
Thank you for sharing your MS story with us. Wow, 17 years of symptoms before a final diagnosis. I don't know how you managed that long not knowing a name for what was happening all that time.
Yeah, it was crazy. But knowing its MS has its own challenges ... A seriousness. The best part of knowing is that I'm able to address it with diet, exercise, rest, sun exposure, de-stressing, etc
cam. ryn.n Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Oh my goodness! 17 years!!! God bless you! I've had symptoms since 2009 and just was diagnosed with CIS, but I too feel it's full blown MS. Thank God you have an amazing attitude! Take care!
I'm going to have to sign on I think on my main account, but for now I have so many questions about CIS and MS. Hopefully you get this. It's the latest post. The rest of them are from 5 yrs ago.
Spencer, i want you to know how much i appreciate your honesty and the details over 17.yrs. i had a brain mri by a neurologist in 2016. No "long fingers" of white matter. Now, i have spinal sclerosis and have a spine mri in a few wks. I am thinking back over all the symptoms no one would pay attention to since 2017. Thank you also for using medical terms so i can find out more. Blessings to you, my friend.
Thank you for sharing this information. I have been on this journey to find out what has caused my body to attack itself. I’ve been going through these issues for several years and no definitive answer has been given. I had to stop working because of the fatigue and exhaustion I have all the time. I’m still trying to get an answer but thank you for showing that I’m not losing it that there really is something wrong and I shouldn’t just accept no as an answer
Have you tried carnivore diet, or ketosis, or autophagy by fasting, or intermittent fasting? If you've tried other diets, please share. Different things seem to work for different people.
I’ve had many symptoms. Couldn’t walk couldn’t talk couldn’t see. My last pregnancy I was in terrible pain they said I had Sciatica my doctor delivered my daughter early. I had Spinal Tap they tried 3 times the pain was unbearable that was a yr ago. Neurologist appointment Monday. Nothing in brain MRI. Im so inspired by you and I want to thank you for sharing ❤️🙂
Angel Jones Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Thanks for sharing your story! I was diagnosed in 2018 but have had "known" symptoms since 2017. I'm on ocrevus infusions now.. but haven't had much success yet. I was on Gilenya for a year and it was horrific. Worst I've felt in my life. I also think about how it might be better off meds but im still trying for now. My older sister has had MS for 16 years and she was on a few drugs early on but hasn't been for a few years now.. and she prefers being off them. Honestly I'm really happy for you that all the spinal lesions you have havent affected your mobility. I deal with crazy..like crazy amounts of pain daily and a consistentlynumb left hand and arm from spinal and brain lesions. It just fascinates me how people have different experiences...but even if we experience it differeny we get it.. nice to know others get it.. its comforting. Im also vegetarian and lead an active lifestyle... so I'm interested in seeing your journey and your wellness plan.
Great hearing from you, and thanks for checking out my story! I've heard a lot of accounts of people jumping from one medication to another, which is part of why I haven't gone that route. For me, it's 5 years without an exacerbation since changing my diet and going on Vit D, so I'm hopeful. Hang in there!
I had symptoms 11 years before dx in 2009. I've never taken any of the MS medications. I do take vit d3, fish oil, coq10, and magnesium. I try to eat clean. 14 lesions on the brain and dozens on my spine- all but two were on my scans already at the time of dx. I was told the same thing in regards to becoming wheelchair bound and such. So far that is not where this journey has taken me. It's nice to hear your story. Be your own advocate and continue to make educated decisions!
I like the way you talk about it all, Michelle. As the years tick by and I continue to feel vital and healthy, I've found others (like you) who are doing well off the meds. Hang in there and stay strong!
Michelle Scott Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Hi sweetie 😊 I was doing some research on MS. Look up the link between MS and gluten. It's been also adviced to cut off processed sugars. Those patients actually managed to recover. Good luck 🍀
Thanks for the great video and telling your story! I'm 66 and I had my first "episode" at 29 -- woke one one day one side went numb and could''t feel heat or cold or a pin prick and the other side was in pain. It was before MRI's so they thought first ms, then transverse myelitis. I recovered about 98% in year after steriods and kinda forgot about it, but then started getting sick from fragrances, and became chemically sensitive to things that didn't bother me before. I have t really stay away from pesticides and strong checmicals.. Then 12 years ago I had pain in my feet and got the diagnosis of ms (had the horrid spinal tap which was a nightmere especially afterwards). The nueuros (and I've been to 6) feel the ms activity began when 29. I think even with what seems like low success rates, being on an ms drug is a good thing in bag of arsensals. I can understand your position to just get used to living with it, as you say, for a year and then decide. I have the same reservations about all still even though I take Copanxone which according to all the neuros I've seen is the safest with fewest side effects. I've been on it off and on (now on when more lesions appeared a few years ago). The thing is that the ms activity in the brain (as I understand it) continues in the white and grey matter and spine whether you feel symptoms or not, and whether it can be seen or not. This is a progressive disease. It gets worse over time -- can be slow can be steady can be really fast -- just I think things can't get any worse they do. Everyone's different in how it progresses, but it does get worse over time which is the big fucking bummer. Like you, I've had periods of feeling pretty okay, then been hit bad, recovered, but the last one I didn't recover from -- a pain that migrated from my feet upward and it's been 12 years of intensifying pain in the whole lower body and has effected my digestion. So I'm kinda with Junior here in terms of encouraging you to consider Copoxaone. And medical cannabis is really helpful for pain. But certainly is just part of a bunch of things I do for it. Check out Montel Williams' arsenal. And there are these Research Updates I get from the MS Assoc of America that I read with great interest. The studies on salt are interesting. You can ask to be on their mailing list. Anyway thanks for posting this! We really help each other with these videos.. maybe I'll make one! Take care my comrade.
Hey Laurie! I appreciate all your thoughts and ideas ... plus, hearing your story is pretty powerful. You've been living with it through quite a few changes in the medical community. I know what you mean about the disease being progressive and degenerative, and I also know that nerve and brain damage can progress over time without one really noticing it. That certainly is a scary thing. With that said, I haven't seen any longterm drug trials that prove a longterm drug therapy helps. Maybe my reading of the literature is partial -- I'm sure it is. Anyway: best of luck to you and it's great hearing your story! Take care, Spencer
I had my first exacerbation i 1978, and was not Dx until 2004. Took Copaxone for several years and finally decided to quit, for several reasons. Just had my worst exacerbation since the first one, beginning last December. I fell, my legs went numb, I could not walk and I am in a foreign country where MS is nearly unheard of. But the doctors I saw knew enough to treat me with steroids and vitamin B shots. Also increase vitamin D, and four months later, I am nearly at my base again. I say nearly because I still have extreme fatigue that makes me have to sleep during the day, along with the usual tingly legs and arms, muscle spasms, pain in my legs, and balance problems. But I am thankful to be walking again. I do not know why I wrote all this but it felt good to be able to get it out here. Thanks for reading.
That sounds challenging, but also kind of terrific since you've been living well with the disease for so long AND you took care of it in a foreign country. Way to go! Keeping those D levels up is critical and usually easy to do ... hang in there and it's great hearing from you. !
@@SpencersMSStory Thank you for your nice reply, Spencer. Yes, we do have to look on the bright side and I am thankful to be able to walk again, unassisted, and to have lived well with the disease for so long. I am sure you understand, though, the fear that comes with every exacerbation, not knowing how much function you will be left with when it finally subsides. Well, it was helpful to me to just have a place to write about this. Thanks for your encouragement and for your site. I wish you good health, always.
So glad to see your video. I've had symptoms for over ten years. My doc thinks I have MS but my MRIs don't show lesions so not officially diagnosed. I've been on the Swank diet all this time. It took 18 months but my symptoms finally went away. ( numbness, tingling in arms and legs, extreme fatigue, cognitive deficits, trouble finding words or else substituting the wrong word, etc.) these all still return if I get tired or stressed out. My doc told me he doesn't think much of the dmds, so I am really happy with the lifestyle adjustments I've made. Of course, I totally respect people's choice to use the drugs. I know they work well for some. I look forward to seeing how you live with all this now that you know you have it. I wish I knew for sure one way or another but I've learned to live with the ambiguity.
Lisa Tuckett hey I'm on doctor john mcdougall's diet it's been 3 weeks now haven't noticed any symptoms improved did you really cured MS? did it really took 18 months or you get better slowly overtime? i have try lots stuff hoping this ganna work.
Hey Lisa! I'm planning to post a follow-up to this video ... as I've been doing quite well with careful attention to diet, rest, exercise, vitamin D levels, sleep, stress levels, and more. MS is a highly variable disease, but there do seem to be a lot of us doing well without pharmaceuticals
Hey Justin -- in my readings, and here I'm mainly thinking about George Jelinek's book, it seems that diet can take 1-2 years or more to truly stabilize the tendency of symptoms. So that's to say that dietary changes likely take a good long time to be actually felt and experienced.
Lisa Tuckett Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
I was 44 years old when I was diagnosed with relapsing and remitting ms ,while living in Ireland. Found out when I came back to states and saw a Ms specialist I had been misdiagnosed for many years. I was showing signs of ms since I was 23. Heat is my worst enemy, numbness, blurred vision. I'm currently not taking anything due to side effects. Best thing to help me was cut out any foods that are processed or have preservatives.
hey man i love your story and braveness' i started having my first symptoms in the summer of 2009 when i was 17 and i was bedbound for about a year. i dropped out of higschool and moved in with my grandmother. i was pretty much in bed for that entire year. a really goid friend of mine would come hangout with me and bri g me food and stuff. i had multiple bloodtests and ekgs ecgs mris full pa el blood workups and everything cameup clean. everyo e in my family ruled it as depression. around the summer of 2010 my symptkms got alot better bcs i was off of my initial begging flareup so for about a year i was good ive had my flare ups last between a year to 2yrs with feeling good or decent rather about 6m-12m anyaaya fastfoward to november of 2018 i aas finally diagnosed with MS almost a decade later. the releif of being diagnosed with slmething i k.ew i had all along made me and everyo e around me feel alot more comfortable.
I was officially diagnosed in 2012, but much like you, I've had symptoms for the last 12 years. You are the only person I've known who has experienced hypersensitivity. Mine is to sound and touch (mainly metallic objects). Thanks for sharing.
I have had that "touching cold" was feeling like touching perma-ice. It improved. I am happy to get an explanation, because I was wondering if I was just imagining it.
Thank you for sharing metaspencer (my husbands name is Spencer!) Someone I know had many MRI's just like you and each time, they found nothing. Eventually she decided to pay and see a top specialist in MS. He took her many scans and magnified them and on doing so he was able to see hundreds of tiny lesions that couldn't be seen with the naked eye. MS can take a long time to diagnose and some people never get diagnosed but instead get offered a diagnosis of FM. I say, if the symptoms fit, keep pushing for answers. I'm glad you did.
Wow, that story about the scan is pretty crazy. I've had multiple neurologists read my brain scans and see different things, so there is also the interpretive filter. I agree with you about FM and some of the other syndromes. Thanks for the note and for checking out my story!
I was diagnosed last year with ms and am 50 years old. I'm on the Wahls diet and am doing really well on it so far. I'm not too mobile but I'm praying for some results. Good story and I love your confidence ❤️
Hang in there! I'm 52 myself and haven't had an exacerbation in 7 or 8 years after following the diet and getting my vitamin D up there. Hang in, stretch and move as much as possible, and stay positive. You've got this!!!!
@metaspencer Thank you so much for the encouraging words. I have a very bad back injury as well im trying to recoup from. I have always been such an active guy my whole life so this certainly an eye opener. Again, thanks for your kind and encouraging words 🙏
@@famasmaster2000 Oh dang, that back injury sounds rough and with MS it can be hard to tell what symptoms are from MS and what's caused by something else. Anyway: hang in and rest up!
Wow brother I'm sorry to hear this happening to you. You look good and wouldn't have ever thought you had any issues the way you tackle you prison bus videos you are a go getter for sure. Stay strong my friend.
Hey, thanks for the kind words and for checking it out. We all have something or other, I suppose ... and you're right: I'm doing pretty good! Life sure is sweet and I try to enjoy it. Cheers! :)
Thanks for telling your story. I'm 35 and have had symptoms since I was 20 and still don't have any answers. I saw a neurologist at first which put me through the ringer she gave me 4 spinal taps the first one she tried to do herself and my leg started swinging involuntarily. She blamed me saying I had a low pai n threshold. The the other three were done via xray by a radiologist and went perfect but it had to be repeated 3 times bc the lab kept losing the fluid sample. I recently had a MRI of my brain without contrast that show a lesion that was nonspecific. So right now I'm just kind of seeing my primary and that's it bc I'm terrified to see a neurologist. I did get a second opinion once and was told it was all in my head. At the time of the consult I was asymptomatic which didn't help.
Wow, what a hard story. A neurologist at s big city hospital MS clinic should be better... they only knew for sure with me with spine scan. Most important thing: stay positive! Eat well! Rest! Etc... hang in
Thanks for telling your story. Its one of the best ones i heard so far. Especially the part that your brain scan was clear, so they said you don't have MS. My 1st visit with a neuro who hasn't even looked at my MRI said it wasn't MS. But in the report it says i have a lesion, T2 flare i think. Yet the neuro says that its age related but he has no other explanation for all of my symptoms.
Thanks for the kind words, and my thought for you is pretty simple: hang in there and be patient. I've found that doctors, while they try hard, can't always see the whole picture. So time and multiple visits can help. All my best!
Hi, loved your approach to you ms. So positive and rational. I was diagnosed in '88 but like you had symptoms for years prior to my diagnosis. No disease modifying drugs back then; only Pred'lone as a treatment for relapses which I did take. Tried to go treatment free until about 6 years ago as each MRI showed new lesions. On my third protocol now as my annual MRI does continue to show additional active lesions. With that being the case, I'm now on the 6 monthly infusion which hopefully will stop any more damage. I've continually adjusted my diet protocols too, giving each a good two year trial and can conclude that the Keto diet has really helped my crushing fatigue. None of my diets thus far has stopped new lesions forming nor has any drug so far! I find this revelation remarkable. I'm now having MRI's every six months which should hopefully show fewer lesions after being on the infusions, by that time, 12 months. It would be great if they work as even after having MS for over 40 years with multiple lesions I am still walking. Good luck to you! 😃✌️
I'm sorry to hear about the continued disease activity ... darn MS can be a doozy and hard to predict! I'm hopeful, as are you, that your current treatment mellows things out for you. Hang in there, stay positive, etc. etc. In my experience the disease can simmer down as quickly as it heats up, so fingers crossed for you! :) As for me, I've been in a nice relapse for 3 years now ... it's been good to not have new problems all the time. Take care!
You should have a methylmalonic acid test done, which will show your B12 tissue level. A B12 blood test is no good, you need the M acid test. The B12 can be low at the tissue level and never show to be low in the blood. Many people have a MTHFR defect where they can't convert B12 to the usable form and it's never absorbed by the cells. If you have this defect, you'll need to take the methylcobalamine B12, which is already converted for use in the body. A low B12 tissue level can cause brain lesions like you have. It mimics all the symptoms of MS and is often misdiagnosed as MS. My brother suffered from a low B12 for years, but thankfully this internet came along and I had access to all this information to figure out what was causing his problems. When the B12 gets low at the tissue level, it elevates the methylmalonic acid, which eats the sheaths from the nerves over time. The high M acid also blocks enzymes in the urea cycle that convert ammonia to urea. When the ammonia becomes elevated it also causes demyelination of the nerves and brain lesions. Our family comes from Nordic ancestors who immigrated to the US in the 1800's. People with ancestry from Sweden, Ireland, Scotland, Norway, and other nordic countries have a high chance of having this MTHFR gene defect where they can't methylate B12 and their tissue becomes low. Anyway, I just thought I'd share this information with you and the others underneath your comment. It's a shame that doctors don't ever test for methylmalonic acid. Most of them probably never even heard of it. If they do test the B12 serum levels, and it shows normal, they rule out a B12 deficiency, when it could be low at the tissue level. My brother's B12 blood test showed normal while at the same time the tissue was extremely low. His methylmalonic acid was so high it was almost off the chart. Once the B12 is restored to normal, it takes about 2 years for the body to reform the myelin sheaths that were damaged. I was just curious if your doctor ever did a methylmalonic acid test?
Stay Active. I had hep B vaccine which started it. Fast forward and my weakness started after I broke my foot and three years later I need cane due to limp. I was formally diagnosed last year. Now I am making efforts to find something- the best MS diet that will work with me. I hope to develop improved strength with my walking and energy. I now I can see how gluten, sugar, hot and cold affect me. I’m not keen on meds since a vaccine started this in the first place.
Hi Spender. Good job on the video. I have had MS for 18 years, was using a wheelchair for four years and had numerous relapses until I started Tysabri in November of 2006. Since then I walk several miles a day and have not used a wheelchair, crutches or a cane since 2007 and I have not had a relapse in nearly 10 years. I am JCV positive, but got a low titre, but I have never been scared of PML.
Hey Vern! I also walk daily, which I think is a great way to keep active. My JCV titre is far too high to risk Tysabri, but I've heard many good stories about it (like yours). Hang in and thanks for commenting!
Vern Beach my mom also used tysbari. but aftr 20 doses neurologist stop it ... now she takes nothing fr ms. bed ridden and become epilepsy patient also
Oh, Humera, I am sorry to hear that. I know a few people here that have been in the same situation (doctor's would stop giving Tysabri after a few years). Some have switched drugs, others have switched doctors so they can still receive Tysabri.
Since I just finished my HCA course, I like learning more about diseases and try to understand or to be able to listen to to those effected by it without making them feel bad or awkward. Thank you for sharing and your video inspires me. I say it is your body, you have the right to choose and someone might choose a different route, I think since you are the living it, and I say this with respect to all who are going through this, do what you think is best for you. God bless you in your journey! All the best to you!
I've watched so many My M.S. Story videos and they all scared the crap out of me. Yours did not. I'm taking the same approach as far as meds go. In my gut I feel like the drugs will make everything worse and when I'm prescribed them I fill them and then just don't take them. Stress MAKES EVERYTHING WORSE. And so do heat. If you can take a room temperature shower (may be a touch warmer than room temperature). I am not a doctor and I am new to this (1 year into diagnosis) but so far I don't feel I need any of the medication. Of course that could change but knock on wood I hope not. Thank you for the video. Sincerely, Axel Rosey
Thanks for the support and for checking out the video. I'm now 4 years without an exacerbation and no interest in the meds ... I think my anti-inflammatory diet, vitamin D, and low stress help a lot. You've got this! Hang in and stay strong
Thanks so much for sharing this; it is so much more helpful that most people will ever realise. I was misdiagnosed with something else years ago but knew "something was up" as I never got better. Only just recently diagnosed correctly.
Latrice Lovelace Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Yesterday, I began getting diognoised for rr ms. Watching the testimonial of all you has been life changing on so many levels: courage, clariying, motivation, eye-opening. Thanks. I vasilated be tween thinking I had an amazing immune system to questioning my mental health lol. I always "got better" and pretty much forgot about it between episodes.
Wow, Nancy, that's pretty intense. Just yesterday! Well, make sure to breathe and relax and rest and all of that. In my experience, all the new info of diagnosis and whatnot took a lot of time to assimilate and get comfortable with. Hang in there!
metaspencer thanks spencer; I've been dealing with symptions for 20 some years. This goaround, I had multiple issues that could not be ignored. I too believe medications may prevent a future full of regrets. Your Immune system weaken with age. Take care of yourself. Nancy
Nancy Southerland Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Thank you for your video I have MS also I was four and a half years before I was diagnosed I've been on a roller coaster similar to yours and if and have not accepted medication as of yet thanks for the video
The rollercoaster is a tough one! For me, things have settled down a bit in the past two years, which I'm grateful for. I'm hoping you find some similar stability. Be strong!
Very helpful, especially for those in limbo. Thank you for taking time to do it and you get it really well. Go with you gut. Meds kill (just to negate some of the drug pushers)
My brother tried so many diets, so many drugs and supplements and nothing works. He's so dillingent in all this that it breaks my heart to see he is getting worse. I wish his MS went like yours...
I'm sorry to hear that you're struggling! There is a lot to take in and sort through, which can take some time. In the meantime, most people would say that making sure your vitamin D levels are in the healthy range is pretty important.
just got my mri back. I have ms. I am so crushed. This explains all the weakness in my ankle foot and numbness and back pain and my eyes when I was younger I went blind then got my eye site back. I had 2 years of IBS then it cleared up like nothing. Doctors found nothing! Eyes were oral migraine, the numbness and weakness in right foot was pinched nerve. My tongue tingles for about a year and this is what lead me to ask the doctor for mri scan. I have lesion in my brain and my tongue is partially numb and its horrible. I am so crushed. Had to call into work and tell them I cannot come in and spend the whole day in tears.
Oh my. I’m sorry to hear, but at least you have some answers. I’d strongly recommend an anti inflammatory diet ... take some time to think about things and stay positive. Hang in there!
Usually spring/summer time, sound like allergy to me , check Dr Terry Wahl and investigate IgG food sensitivity test... Tell me please are you allergic in general ?
Idk if I have Ms yet haven't been diagnosed but I haven't been working I'm a stay at home mom and that's my logic.. like maybe I'm numb because I'm not as active as I use to be and I'm mostly sitting on the computer or whatnot..I'm scared though
Omg... my butt went numb in my 30's a few times... I blamed it on the cold, being on my feet lots, and just being weird!! Holy Cow!! I hadn't even remembered that one. Thank you soooo much for doing this vid. I have been really sick for about 6 yrs, no diagnosis, and just started watching these vids. I think they are helping to save my life! Ok, that's as far as I got, going back to watch the rest.
Thank you for sharing! What a crazy rollercoaster ride... I'm glad to hear that the healthy lifestyle is working for you. That really encourages me to stick to my dietary beliefs to stay well. Thank you for your positive attitude towards this riddling disease - it helps :)
In 2010 i suddenly had double vision, vertigo, numbness on legs ,dizziness Went in casualty n did numerous tests Nothing found Put on meds n got better Now 2022 i have ms ....more symptoms Diagnosed by a prof of neurology N put on injections .... Still struggling cos symptoms have been not attended to earlier Blame doctors....
Sounds tough! As you know from my video, it also took me many years to get a diagnosis. Everyone takes a different path but I'll just tell you that for me a strict anti-inflammatory diet has kept me from having any more exacerbations. I have many more videos about MS linked here ... hang in there Shireen!
One year after posting this video, I made a follow-up: th-cam.com/video/qhQLzv67Nlc/w-d-xo.html Two years later I posted this video: th-cam.com/video/7I0ujnOqDfk/w-d-xo.html Three years later I posted this one: th-cam.com/video/28CJb48KAjw/w-d-xo.html
dude - your ms is caused by an infection in your jaw- usually after an extraction - dentist do not remove the ligament which stops the site healing then goes necrotic. implants and root canals cause infection aswell. infection also happens if your wisdom teeth dont form or form properly. you need to find a hollistic dentist and get them to open up those sites and clean them out and remove soft bone. i had primary progressive ms and once i had my infections cleared out all my lesions vanished and all my pain stopped in about 2 weeks. my eye sight returned in about 3 months, and all the brain lesions went away. numness went, need to urinate returned to normal, no more sexual dysfunction and no more constipation Its in your mouth dude - dont live in pain
its not a theory.. search for graham munroe hall , or nico jawbone lesions, dental cavitations - they are fact - your standard high street dentist doesnt acknowledge that they exist as they arent trained on these or to remove the periodontal ligaments but its been in the medical literature from 1920 by gv black
Thank you for this video. I'm going through a bunch of tests right now because I've had dysphagia now for almost 8 months. One of the things I'm getting tested for is ms. Watching these kinds of videos really convinced I do have it. My symptoms line up so perfectly with others with ms. It's still up in the air if it's the case. But these videos really help me not be as scared as I was when they told me they would be testing for it. And even if I don't have it I find hearing people's stories interesting and helps me understand those who have it. Google makes me sound really scary. But even people at their worst with ms are really positive people. I want to be positive as well no matter what it is causing my dysphagia. At the end of the day. These videos just help me be more positive about my medical situation no matter where it goes. Thanks for sharing. It helps a lot.
You sound strong and positive to me! For me, getting a diagnosis hit me like a ton of bricks. But now, these many years later, I'm doing great and it's just one more part of my life. So hang in there! And be well!
Thanks for sharing. It's not easy I know. I'm learning to appreciate each day that I'm mobile. I'm 39, had my first intro to MS in 2006 with O,N in my left eye. Sent me completely blind & then back to a somewhat reduced state over about 4 months. Parts of my face also went numb as if I'd just had a "local" & a tooth filling. It left me alone for a while, then in 2008 my right eye did the exact same thing. On a side note, I've also had a condition called "swimmers ears' which due to infection made me deaf for 3 weeks. Talk about spending a day in someone elses shoes! The first 2 episodes & the subsequent MRI's showed no signs of plaque but a lumbar puncture did shine positive for immunoglobulins. So it became a waiting game. Now here we are, 2016, just had my 3'rd MRI in 11 years after tolerating months of fatigue , aches, headaches & with my right eye clouding over, I now have the diagnosis of plaque in the 4'th quadrant. It's funny, at the same time that diagnosis scared me, it gave me the chance to relax as now I have a reason for all the symptoms. For the past 5'ish months now my physical self has diminished a bit, but to due my immune disorder I also have Ceolicas disease which has seen me shed about 25kg (55 pounds), I've radically changed my diet to avoid all wheat, barley & all it's derivatives. Some multi vitamins are on the cards too, but my diagnosis is so fresh that I'm yet to go back to my specialist to follow up the scans. Basically, I feel like an old man in a fit body...that make sense? Some days are better than others, but I live everyday with some type of physical or cognitive fatigue. If I want to plan a big day, like spear fishing with my son, I'll take it easy & eat well for a couple days leading up. Some of my symptoms are weird as hell too, half a numb penis & anus, numb ass cheeks, numbness deep in the leg muscles, this also causes "restless legs" & very uncomfortable. singular nerves in my heel ligaments twitch, random muscles will visibly twitch, I get restless if I either sit or stand for too long, & this includes my concentration, mood & cognitive reactions. Basically, if I'm somewhere or with someone for too long, I get cranky! Mornings suck too. I smoke pot to get to sleep quickly & efficiently. Helps me sleep through the night. I sometimes get flashes of light with my eyes shut, as though someone has shone a torch at me...real enough is it that I open eyes to see what's there! No: 1's & 2's are still normal, with exception to bowling people over to get to a loo quickly on occasion. My mobility has slowed a bit, but I deliberately do things like look down when I walk, just to be sure I won't trip, as with most MS folks I am very sensitive to pain & cold, Love my heat though for some reason? I mess up my written words too & I often smell things that aren't there. I firmly believe that I have lived with this immune disease way prior to 2006. I may have been born with it. I was born with eczema & food allergies, so the connection is easy to make. I'm going to stay clear of meds if I can. I think the right diet is the go for me.
What you describe is all unique, and yet it connects up with so many of the experiences of others (with this disease). All I can say is hang in there and think positive! Even with the challenges, you seem to be doing pretty well!
Tasman Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Omg 1/2 of my vagina goes numb. When I told my dr he looked at me like I totally made it up. I also have celiac disease. Each day is challenging. I also have gluten ataxia.
Oh wow, that sounds all too familiar. For me it was kind of a relief to finally get the diagnosis, but at the same time super challenging to come to terms with it. Hang in!
Hi, just saw your video. I also have had ms symptoms for 17 years. I was diagnosed in Dec of 2015. I had many symptoms throughout the year s and doctors chalked it up to many off things from anxiety disorder to nerve pain in my face from a dental visit. whatever.lol. the first symptoms came around when I was out in the heat and I couldn't talk well, walk well and couldn't use my left arm. through the years these symptoms would come and go. i had problems with vision, tremor in my right hand and more. spinal tap have always showed nothing, but my MRI shows lesions more on my cerebellum
Hey Spencer, I came across your channel with one of your current projects, "The Prison Bus" conversion. Looking thru your channel, I came across your MS story and became really inspired with your lifestyle and your insistence on not taking the medicines. I think that was a wise choice and truly love that you are doing a self treatment with healthy living, being active and controlling your environment and stress!!! Keep doing what you are doing man, and I hope your exacerbation will decrease!!!
This was so helpful. I suspect my 7 yr old son has MS, we're in the beginnings of finding out what's wrong. I never considered NOT doing medication while pondering all the possible outcomes. I really appreciate your story and sharing what you've experienced so far.
Oh my, good luck to you as you seek answers. If it does end up being MS for him keep in mind that vit D3 and anti inflammatory foods will help. Hang in there!
Wow man. I just came across this video. You work so hard, but work is also exercise. I sure hope you continue to be able to enjoy quality of life. Life is short. Make the most out of what the Good Lord has blessed us with. Take care of yourself buddy.
Life is short for sure. For me, having a potentially debilitating disease has given me focus and an appreciation for the everyday. I saw that you were watching some older videos and thought you might run into this one. Thanks man!
Thank you for this video. I have a lot of MS symptoms and my mom has a legion on her C2 but never diagnosed. The neuro I saw last week said sometimes people have chronic pain and we don't know why *eye roll*... But he did order me an MRI for head and C-spine (wish they'd do whole spine) for this Friday. I'm worried it wont come back with anything and they won't know what's wrong... I'd rather they tell me it's MS or something else, rather than "we don't know, your MRI is clear". So to know that even if that happens, down the line they might figure it out or finally see something and give me some sort of answer. I'm in the military and am already looking at discharge for PTSD, so I'm hoping whatever is going on physically with me can be figured out before my med board so that I can continue to get decent treatment after I separate and/or get medical retirement.
Hey Andrea! First off, good luck with those scans. I hope they are clear, though from what I've read scans only tell part of the story. What they reveal is partial. I find MRI's a bit awkward to sit through, but super worth it for whatever info they provide. That situation you're in is pretty familiar to me: you're in a spot where you want to find out what is going on with you, but at the same time it would be nice to hear good news. I wouldn't wish MS on anybody and certainly hope you don't have the disease. With that said, whatever the results are I'm hopeful that you can handle it and adapt. Anyway: hang in and thanks for checking out my story! I have been posting updates to this video each year, just so you know.
metaspencer I’ll check out your channel tonight... I’ll be at home alone anyways because bf is at work and I hurt too much to drive the half hour to and from to pick up my baby girl from her daddy’s...:-(
OMG - you are describing my doctor/neurologist experience s to a T. My neurologist said not MS because my brain lesions aren’t lined up... meanwhile I’m just living with symptoms.
I've never heard about lesions needing to be "lined up" with anything ... that sounds very odd. Sadly, many docs seem to work outside their specialty areas. Seeing a dedicated MS specialist at an MS clinic, as I have a few times now, may give you some more answers. Anyway: hang in there!
I have “scattered tiny lesions throughout my frontal lobe” which in the radiologist report stated could be a sequela migraines. I’ve had headaches, mainly due to vision problems. My initial issues were blurred vision especially in the afternoon when I’m fatigued. Thought I needed glasses. Went to the optometrist and he said there were some abnormalities in my pupils and wanted me to see a neuro ophthalmologist. Had a brain MRI that was normal. Now 4 years later I’m having tingling/numbness randomly and the most irritating being constant muscle twitching is my legs mainly, second in line being my face and then occasionally in my abdomen and arms. Also right thumb tremors. Waiting to see a neurologist.
I started having these types of issues since 14-16. I'm currently 25 now. It's getting worse and my legs constantly tingle. Spine tingles. Arms tingle.
I'm at 16 years and at the end of my rope! Since my husband is asleep, I'll watch you tomorrow. I cannot WAIT to see what it took you to get diagnosed! Teri Garr took 26 years. THAT WILL NOT BE ME! God Bless You brother!
metaspencer Haven't I already? 16 years is a long time. I'm STILL trying to get my Kindle to play your video! It's ironic we've opened up a dialog w/o my having been able to hear you yet.
Yeah, I usually get to chat with folks _after_ the video plays. But whatever! Like MS, life can be pretty unpredictable. I'm in year 18 of symptoms and doing a lot better, so I'm getting more and more optimistic! Hang in there.
I’ve only watched one of your videos but subscribed and will be watching more. I really appreciate hearing your story and to be honest it has me a bit choked up. I have a long list of MS symptoms that have been occurring for several years but for the past 18 months they have been severe and when they all of the sudden peaked and I got a bunch of new symptoms an ER doc suggested seeing a neurologist and considering that it might be MS. I thought she was nuts until I started doing my research. Needless to say, I am still undiagnosed (2 brain and upper cervical MRIs later) and feeing a bit crazy dealing with all of this. However, in so many ways I feel vibrant and healthy like you described yourself. Sometimes I feel almost punished by the mainstream medical field because I take care of myself therefore my condition isn’t bad enough that there’s help for me...?? I am a fitness instructor. People look at me all the time and say “but you’re so healthy and fit”.... I know this is common with MS people. I could go on and on but basically what I wanted to say was “thank you” for sharing your story. These stories make me feel less alone even though I am undiagnosed.
Oh wow, great to hear from you even though it's a story of being stuck in a kind of limbo. I guess you don't want to be diagnosed but probably also feel like some kind of solid answer would be reassuring. I can completely relate to so much of what you say ... Hey, keep in mind that I have follow up videos posted each year: and it's not been a downward spiral! :) th-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html?view_as=subscriber Keep doing your fitness stuff and staying healthy. The docs might not know what is going on with you, but you can keep the diet and vitamin D levels rolling along in great ways way ahead of the docs. Anyway: thanks for reaching out with the comment and BE WELL!
metaspencer thank you! I am also a holistic health coach (masters in health psych) so I have gone down many many roads trying to figure it all out! Amazing what doctors don’t know or investigate 🤯
Dude your story sounds exactly what I’ve dealt with for years. I am in the process of diagnosis- seeing a neuro on Monday and praying for some answers or at least further testing. I was hospitalized about a month ago for 5 days, and for some reason they absolutely would not do a scan on my full spine. I literally begged. I couldn’t walk until the 4th day, and have been using a cane and walker ever since. I’m not giving up.. they ruled out other possibilities such as Lyme, lupus, rheumatoid.. but I will not give up this time. Praying for you that you have a positive outcome with your decision to go the non medication route 🙏🏼 thank you SO much for sharing a bit of your story with the world!!
Hey Kim! Good hearing from you and hang in there! It's been about 7 years now since I was diagnosed and I've been DOING GREAT on an anti-inflammatory diet and vitamin D. Get that vitamin D checked and good luck at your doctor visit! I hope you can get that inflammation down soon
@@metaspencer thank you for your kind words! That’s wonderful to hear, and thank you again! I may need to pick your brain in regards to the anti-inflammatory diet. And again, thank you for sharing your story with everyone. It really helps me to feel like I’m not alone when I hear such similar stories 🙏🏼
@@metaspencer also yeah, my vitamin D is low, so my pcp told me start taking vitamin d, b12, and calcium. Here’s to hoping we all live a long, happy, and HEALTHY life 🙌🏼🙏🏼
Thank you so much for sharing your story. I'm currently going through the process with being diagnosed. I've had 2 flair ups in 2 years almost exactly a year apart. Both lasting around a month. From what I've noticed they're similar but progressed. I've had the worst luck with medical attention. I was wondering; if anyone can answer this. Would it be better to get tested during a flair-up rather than not?
Getting scanned during a flair might be more visible if you take the glandoliniun contrast agent, but MS lesions will likely show up either way. If you suspect MS most people would agree to get your vitamin D levels up. I’d also suggest an anti inflammatory diet which can’t hurt. Keep positive and hang in there!!
I was diagnosed in May 2021. After losing some vision abilities in my left eye. Started Ocrevus in Aug 2021. Trying to stay positive. Currently symptom free. Next MRI is Aug 2022.
Symptom free is great! Way to go! It took me a few years to come to peace with the diagnosis, so I'd say take your time. I've been posting videos about "my story" each year (they're linked here on the page) and things have definitely improved. So I'm hopeful for you! Be well
@@metaspencer I wish I could say I'm at peace with it. There are a lot of emotions that I feel. I am a mother and wife with two kids under 10. I struggled a lot with thinking what will my future be like? I'll be able to see my kids graduate to see them grow to see the people they will become. All of this is going on during the height of the pandemic so no support groups were working. I'm still trying to find a support group and I'm going to talk to my doctor about what my next steps are as far as my mental health.
@@sarahs.9292 Oh yeah, those challenges and sentiments are very familiar. I found a few support groups on Facebook (of all places!) to be pretty good. For me, and I know everyone is different, I've found a lot of relief and positivity in knowing just how many people are doing VERY WELL with MS. Remissions can be long and even permanent ... disease activity has been minimized for many of us. Hang in there!
@@sarahs.9292Oh yeah, absolutely! And I may have talked about them on my MS channel which is here: th-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html ... the groups on FB I can think of are 1. Best Bet for MS and 2. Multiple Sclerosis and Exercise ... I think there is also one called "Multiple Sclerosis Support Group"
Tonya Sosa Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
MS Views and News here on TH-cam has some awesome and informative videos that gave me a lot of info to keep me up to date with the challenges of living with MS. I officially got diagnosed in 2012 after having symptoms for 20 years. Doctors kept telling me I had Chronic Fatigue, even after not being able to use my right arm for 2 of those years. I was on Copaxone for 1and 1/2 years til I had a reaction so I went off it. Roughly another year went by til last November and boom got hit with major relapse symptoms. Now I'm in the process of starting a new med. i found a great MS center in Kansas City, Mo at St Lukes Hospital. I hope all the best for you. This disease affects all of us differently.
I just really responded to your video. We are similar age I guess and you have been dealt a hard hand, but just, straight up you made this and reached out to people. I really respect and admire you. Clearly you are getting on with life and you have a lot of stories to tell besides the illness. I'll be watching the update with interest Spencer.
Spencer, it seems to have taken you a long time to be diagnosed. but on the positive side, you have been 'vital' for some time. Do you think this is because you are a vegetarian, and your body is well suited to deal with it ? ( seems you were doing 'Swank diet' Before the illness anyways )
+Roderick McDonald ... one never knows for sure if it's because of what we do or just a coincidence. But I do tend to think my long term diet and activity have helped. With that said my more recent nine changes seem yo have helped even more. Your story?
Lori Favela Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Listen man. I have MS , i am 29 years old. U have to get on those meds bro. I met one lady that had the same issue as u with getting on the meds and now she cant even look up, she can hardly walk, can hardly talk and can hardly see. As much as i hate medication i know i have to take them. And lucky me marijuana was legalized here in Florida on election day and that is proven to be 1 of the better treatment for MS symptoms
I'm glad you've found a path through this disease that works for you, but I'm simply taken a different route. Having read a lot of the research on the various MS meds, I still haven't seen any with guarantees. There is risk of permanent nerve damage either way.
metaspencer check out the one i take called "gilenya" its the one that is found to reverse the disease. I havent had a flare up in 3 years now. But if you chose the no medication path i wish u luck but trust me. Everyone i know that has chosen that path gets hit with disabling symptoms when they do decide to come back. I wish you luck buddy. Do whats best for your body not your ego
That's a pretty intense drug you're on, given what it does with your white cells. As someone with a low WC already, I can't take it. Everyone I know who's on a MS drug has ended up with side effects, problems, and ultimately switching between multiple meds. So I'm wishing you luck, as well.
metaspencer I have been on the drug for about 2-3 years and i have never had a side effect. The only time i must say i had a bad side effect was when i was flaring up for the first time and i had to get the "solu medrol" infusion for 3 days, 1 hour a day. That had some weird side effects but its a 1 time treatment. I also take vitamin d5000 once every morning. And my MS is very painful i mean as far as joint pain, muscle pain, and things like that. I have to take a lot of pain medication thats my main issue. Hopefully since marijuana became legal i can get off those and move forward. Where r u from?
It’s crazy to see how much things change the longer you have MS. Your really so lucky to not have to take the meds. I couldn’t see so bad nor walk when I had my first big exacerbation! As soon as I started on the steroids. Then with the disease modifying drugs helped me regain my vision. Your perspective is awesome too! Take care!
Glad to hear you're doing better, at least with the vision. I'm not sure if I'm lucky to not be on the meds or if most or all people could follow the same route I've taken (anti-inflammatory diet, D, rest, etc.). But having had the disease over 20 years now I know what you mean about the accumulation of challenges over time. Great hearing from ya!
I had the same experience with the spinal taps as Spencer. I finally told them that is enough. No more. Lucky you. My MRI turned out to be conclusive too.
Thank you for sharing your story with the world. I know you will help many people who are affected also. Very impressed that you went vegan, and have chosen a very healthy way of life. I’m sure this has made a positive difference. I’ve read and heard about CBD oil being very effective for many like Parkinson’s and/or seizures, etc., so I would give it a try since it is natural. Blessings 💙
I’m almost 6 years into this nightmare. One doctor diagnosed me and sent me to an MS clinic who won’t help me until I have neck and back surgery. It’s a complete nightmare to go through.
It's sad the diagnosis takes so long to obtain. It's my son who has MS. He was 31 years old. Yet he was exhibiting the worst symptoms of the disease a good 5 years prior. Going back further I can see many of the symptoms when he was just 9. As a parent you find excuses for all the symptoms. But when you see your child in a hospital bed his body shutting g down it scares the manure out of you. It was that hospitalization that triggered the tests needed for a diagnosis. You would think that would make it easier. NO it is the start of an even bigger nightmare. Many can't hold a job when the symptoms progress. Without a job and being over 25, you are screwed by the system that was set up to help in exactly these situations. You have to fight the government for Medicaid. Then if you are lucky enough to have weathered that war (not a battle alone) you have the next major war with all its battles to contend with. Getting treatment would sound easy, but with just Medicaid it's a horror story. Not one neurologist in this country will see you without insurance. Then you find out they dont take Medicaid. This starts a two year waiting period before you can get Medicare. The government thinks since there are remissions and most people are not affected so they dont need to be in the category of an I curable disease. It will just go away so you get to wait for two years for Medicare. That is unless you have an unrelenting bitch of a mother that fights the battles. It still took 6 months for my son to see a neurologist and get treatment. In the mean time he had a major relapse. This time instead of 43 active lesions on his brain and spinal cord, it was uncountable covering everything. He also now had a golf ball size blackhole where brain tissue should be. Medicare doesn't care, it's a governmental bureaucracy that only believes in the politically correct diseases. More people's stories need to be known. If it wasn't so fatiguing I'd say do a March in Washington.
Hey Agnes -- Your challenges are very real. My own Mom felt bad for not knowing it was MS for me sooner, but I don't blame her at all. She was just being optimistic whenever I had symptoms and didn't want to think it could be something serious. With all that said, I'm hoping your son has a chance to do some reading and studying up on this disease, as there are many of us our here doing very well with it. Vitamin D, diet, rest, stress reduction ... there is a lot he can do! Hang in there.
@@TheGrandmaTeabag there are definitely some challenging and hard stories out there, but also some inspiring ones. I'm hopeful that things will be positive for you boy! :)
What's JC load? I'm 66 never been on drugs, had symptoms since I was 24. I live alone, no help at all, can walk a few steps, very coordinated, get out of breath after a few steps, sometimes can't swallow. I'm lucky. Until about five years ago I barely knew I had it. Wishing everyone the best.
The JC load stands for "John Cunningham's virus" which is a virus that almost everyone has. It's harmless unless you limit the powers of your immune system, at which point it can attack your brain and kill you. So people taking a few MS drugs, like Tysabri for instance, have to have their JC load tested on a regular basis to make sure they are not going to be killed by the virus. I have a high JC load just naturally, so can't take Tysabri. In fact, I'm happy now to be drug free as I've found that my approach works very well for me. It's great to hear from you and thanks for checking out the video! Be well!!!
I have a lot of similar symptoms as you do in my legs. Such as getting really cold to the touch, numb, and tinglely.. I also have some aching pains throughout my legs. I'm only 17 and just recently went to a neurologist who didn't run any tests just jumped to the conclusion of being stressed out.. I've had these symptoms for months now, and have been doing a lot of research on ms. The first doctor I went to thought it was a possibility and I just want to know if you or anyone could give me some advice on what I should do next.
The same symptoms (numbness, for example) can come from different causes, and the same cause (MS, for example) can result in very different symptoms. So a symptom-based diagnosis can be hard to come to. MS is always diagnosed with two or three of the following: symptoms of MS over time, positive MRI scans (brain and/or spine), and positive signs in the spinal fluid. Maybe just seek a second opinion from another doc
@@metaspencer i contacted the MS foundation and they gave me a list of MS neurologists based on where i live. Hang in there until you find the right dr for you!
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I was finally diagnosed after 30 years of being told it was fibromyalgia or laughed at even my husband of 35 years never supported the fibromyalgia. I’ve known now for a month and a half. I have not worked in thirteen years. Lost my self. Now I’m on the walls protocol for a month. I am 54. I feel like there’s no time left now to start over it has been crazy. I have no respect or care for doctors. Research on my own is still the only way to help myself. Thank you for making this. I denied the drugs from the neurologist. Going for the diet 👍
The Wahls diet is a great choice .. can only help! Hang in, move as much as possible, and I hope you feel better. I'm 6 years in remission now on. the diet. be well
Same.
To laina I had a story like yours no help doctor laughed I haven't returned and do the best I can I was told at age 50 that I have fibro has been a living hell cold shots affected me very sever my doctor just didn't understand I wish you lots of kindness bless you
I’ve been told I have fibromyalgia for years but I have some things that most people I know who haven’t had it, swallowing problems and I’ve had the double vision everything points to it then I’m older and have some of the symptoms of aging as well as other things that are more serious from aging but they don’t really try to find out why I feel better in the winter & living in florida is hell
Had MRIs?
Thank you for this. I was recently diagnosed but have had symptoms for a long time. It's something no one understands and I get so uncomfortable talking about it because of that. People's responses are....really annoying. Being able to come here and hear other people that know exactly what I'm feeling is so relieving. Bless you in your journey and thank you again.
Like you, I've found all the various "My MS Story" videos to be incredibly valuable. There are just so many different experiences with this disease. Take good care!
TheLaney Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
I know what you mean. People either say I know someone who has MS and they have had it for 20 years and are doing well or I know someone who has MS and they are in a wheelchair or just don't know what to say. Only we can understand one another. We need to stick together and support one another.
Your not alone!
agree 100%. getting a diagnosis is a trial.. a long trial.. many doctors, much money spent... Bless this man and all who share their stories and support. MS SUCKS (I hate it) but am trying to stay positive as I lose mobility.
I’m so glad I came across your story. I have so many similarities to this. Initially, my diagnosis was hard to accept. Now. I’m in a phase where I’m just so thankful to finally know what’s wrong with me. I now know that I’m not crazy, but there is a reason why my body has been wacky for the past five years.
I'm sorry to hear that you're struggling, but it also sounds like you're finding some clarity ... and that's a good thing!
Hard pill to swallow but as someone with RRMS at least you have a name to the inconvenient symptoms. Strange but have a friend diagnosed with MS but then was proven to be fibromyalgia. I also have a friend who is JC*, she is taking Techfidsra and once past the pesky fecal incontinent scares says the pill treatment works for her. Nutso these autoimmune diseases :( Hang onto this rollercoaster ride :) Peace&many blessings,
Annette
We have very similar stories and I hate to say this , don't take it wrong , but it's good to know I'm not alone with the way I felt something was just not right , for years. My ms specialist is in Nebraska where I live and like you as soon as I saw her, she knew right away I had ms. I'm fortunate to have her on my side.
And I'm glad to know I'm not alone! There are so many different stories and experiences out there (regarding MS). It's unreal. Hang in there!
My Mom had MS for 62 years, and somehow learned to live with severe disability. She never had the double vision symptom. It took her 10 years to get diagnosed and by then she was in a wheelchair. She never ever wanted to talk about it, or read about it, or think of the future. Literature from the MS society would arrive in the mail and she'd promptly throw it in the trash. Both her sisters had it but were ultimately normal their entire lives because of fewer attacks. The key is to not get stressed. I could see the mind body connection very very clearly.
Sounds like some tough experiences -- the disease can definitely hit hard.
The physical symptoms are tough but the mental fog and depression is doing me in..
Still waiting for diagnosis...had these problems for years but has progressed rapidly
Well good luck! I hope you find some relief and answers
Mental fog and depression are the worst for me too.
I guess there are a lot of us
Hopefully that doctor from Australia can do something with that drug he is working on
Where it can reverse the damage that MS caused
Dr Steven Petratos
Thank you for sharing your story! Your video is the first "My MS Story" I've ever watched and I found it helpful, inspiring, and informative.
Fyi: I've never commented on anyone's TH-cam video before. That's how much I really appreciated this. Best of luck to you and I hope everything is still going well.
Wow, man ... I'm honored! Thanks for checking out the video. When I first discovered all of these "My MS Story" videos, I found a lot that I really liked ... and continue to find them. I have been making annual updates on this channel, in case you're interested. Be well! th-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html?view_as=subscriber
Thank you Spencer. I’ve been following your TH-cam videos. Great job! I’ve had MS for 21 years, just a little longer than you. I’ve done the same as far as taking the DMD’s. I don’t judge or downplay others as they do work for some. I follow a diet of fruits, veggies, fish and chicken. Low sugar and sodium. Lots of exercise, yoga, chiropractic care and daily meditation.
Cool to hear that we're doing similar things! I'm also some fish and chicken now ... but meditation is something I could get better at. Be well! Thanks for reaching out
I knew for 25 years that something was seriously wrong. Many doctors, no diagnosis. Finally in 2015, I went to a new FP doc and she knew right away. Her mom had MS. No one should have to fight that long for a diagnosis.
And I thought I had to wait a long time -- you went even longer. Most importantly I hope you're doing well. Keeping the inflammation of MS down makes all the difference
I have lupus and ms brought on by lupus. I have macular degeneration . I can't have ms treatment and I'm ok with that. My body is a mess mostly because I've been wrecked by chemo used to treat lupus. Stay clean in the mind and stay as stress free as you can. I can't have sun exposure but I have b 12 injections. I have sjogrens which means hot cold is hyper and raynaudes does this to . Lord knows it's hard but my strength is my son his new wife and my fpgrandson keep smiling because life is so crazy you just have to smile xoxox molly from,Sydney Australia xoxoxo
I love your positive attitude! Take what comes at you, I say ... and hang in there! Thanks for the note.
You might find the book and website Overcoming Multiple Sclerosis interesting.
Molly Mayor Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Molly, have you tried cutting off sugar (you can use natural substitutes) and gluten? ❤
I’m assuming you mean refined sugar?
This speaks to me in so many ways. Thank you for your bravery to post this. I can't watch the whole thing yet because I am still processing the first couple minutes.
Thanks for checking it out .... it was hard to post but worth it, I think
Thank you for sharing your story. A very good friend of mine hasn't been diagnosed with MS yet but she has the numbing, tingling, migraines, lethargic, she gets off balance, etc They previously spotted lesions on her brain years ago but she didn't ever go back to the doctor for further testing. (She didn't want to face her fears.) But due to her condition advancing, she is going to have a MRI tomorrow and get to a confirmed diagnosis. I am trying to learn as much about MS as I can to support her, should she be diagnosed with it. I believe that knowledge has power.
She's very lucky to have your help and support! The MRI should tell her doctors a lot, but it's just one test and doesn't always reveal everything. Also keep in mind that some people with MS need MRIs on the brain and spine to show lesions, and the MRI needs to be powerful enough to produce clear images (3 Tesla is pretty good). I'm wishing her the best of luck! If she does end up having MS, I'm guessing the doctors will push the medications pretty strongly. Note that many of us don't take meds and are doing very well ... there are many options for treatment! Take care
It is so kind of you to want to support your friend. I have a few supportive people in my life and they are priceless. You are a good friend.
@@cooksmary Thank you! She is like family to me. May God bless you and your health.
Just want to first thank you so very much for this video. I am so glad I came across it. I am 39 years old and I am experiencing almost exactly the same as you have described in your video. Had odd symptoms for years off and on and dealing with severe migraines. Put things off as just weird or just symptoms from my migraines up until recently when things started getting much worse. I am now just in the process of all the testing with a neurologist. I have so many of the MS symptoms and I am praying it doesn't take so long as many to get diagnosed. You are very positive, informational and inspiring. Keep doing what your doing. This video has really given me hope and help in keeping my head up for the fight ahead of me. Thank you again.
Wow, thank you for the kind words ... I’m hoping things improve for you soon. Since posting this my health has held steady and I’m very hopeful. Check out the other videos in this playlist for annual updates ... take care!
Hi, Katie! How are you doing now? I'd been suffering from migraines for years. I've been told by otoneurologist that migraine kills brain cells in different areas due to ischemia and has almost same impact as MS does.
I’m 65 and started noticing symptoms in my 30’s. I told several doctors trying to get tested. One doctor even said l didn’t know what my own body was doing. I finally got a doctor to test me but he said I was to old to all of a sudden having symptoms. He was stunned when I explained about starting to have symptoms and no one tested me. He said I was right all those years. I’m lucky, I didn’t have any lession on my brain. Mentally I’m just relieved to finally have a doctor who finally tested me.
Wow, our stories are remarkably similar. Good to hear from you and hang in there! I'm almost 50 now and have had it over 20 years ... I'm fortunate to be doing pretty well despite all the screw ups by the docs I've seen.
Thank you for posting your story, it really hit home for me. The "limbo" period is difficult as well as the Neurologists and Dr. that tell us we absolutely don't have it yet you know with all the symptoms that it very well could be.
Thank you so much
Thanks for the note! It’s nice to know we’re not alone in this ... hang in there!
Thank you for sharing your MS story with us. Wow, 17 years of symptoms before a final diagnosis. I don't know how you managed that long not knowing a name for what was happening all that time.
Yeah, it was crazy. But knowing its MS has its own challenges ... A seriousness. The best part of knowing is that I'm able to address it with diet, exercise, rest, sun exposure, de-stressing, etc
I’m 15 and have been told that I could have ms and I can’t explain to you how much these videos mean to me because I’m literally freaking out.
Hang in there! If you could it doesn’t necessarily mean you do, so keep your mind open ... good luck to you!
cam. ryn.n Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Oh my goodness! 17 years!!! God bless you! I've had symptoms since 2009 and just was diagnosed with CIS, but I too feel it's full blown MS. Thank God you have an amazing attitude! Take care!
Thanks for the support and stay positive!
I'm going to have to sign on I think on my main account, but for now I have so many questions about CIS and MS. Hopefully you get this. It's the latest post. The rest of them are from 5 yrs ago.
It took the VA 11 years to get it right. Although I was diagnosed while deployed serving in the military. I relate with your story
That's a long time to wait. Hang in!
Spencer, i want you to know how much i appreciate your honesty and the details over 17.yrs. i had a brain mri by a neurologist in 2016. No "long fingers" of white matter. Now, i have spinal sclerosis and have a spine mri in a few wks. I am thinking back over all the symptoms no one would pay attention to since 2017. Thank you also for using medical terms so i can find out more.
Blessings to you, my friend.
I’m wishing you the best! Sounds like you’re gonna get some answers soon … hang in there
I made my ms story after i saw yours. I gonna watch a bunch of others to, to see how everyone deal with it.
Oh excellent! I’ll check it out and comment. Hang in!!!
Thank you for sharing this information. I have been on this journey to find out what has caused my body to attack itself. I’ve been going through these issues for several years and no definitive answer has been given. I had to stop working because of the fatigue and exhaustion I have all the time. I’m still trying to get an answer but thank you for showing that I’m not losing it that there really is something wrong and I shouldn’t just accept no as an answer
Hang in there!
Have you tried carnivore diet, or ketosis, or autophagy by fasting, or intermittent fasting? If you've tried other diets, please share. Different things seem to work for different people.
I’ve had many symptoms. Couldn’t walk couldn’t talk couldn’t see. My last pregnancy I was in terrible pain they said I had Sciatica my doctor delivered my daughter early. I had Spinal Tap they tried 3 times the pain was unbearable that was a yr ago. Neurologist appointment Monday. Nothing in brain MRI. Im so inspired by you and I want to thank you for sharing ❤️🙂
Hang in there and good luck at the doc. I’ve read of many having complications with pregnancy so you’re not alone
Angel Jones Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Angel Jones ever find out what it was?
Angel Jones omg
Can you expand on what you mean by cant walk
Thanks for sharing your story! I was diagnosed in 2018 but have had "known" symptoms since 2017.
I'm on ocrevus infusions now.. but haven't had much success yet. I was on Gilenya for a year and it was horrific. Worst I've felt in my life. I also think about how it might be better off meds but im still trying for now. My older sister has had MS for 16 years and she was on a few drugs early on but hasn't been for a few years now.. and she prefers being off them.
Honestly I'm really happy for you that all the spinal lesions you have havent affected your mobility.
I deal with crazy..like crazy amounts of pain daily and a consistentlynumb left hand and arm from spinal and brain lesions.
It just fascinates me how people have different experiences...but even if we experience it differeny we get it.. nice to know others get it.. its comforting. Im also vegetarian and lead an active lifestyle... so I'm interested in seeing your journey and your wellness plan.
Great hearing from you, and thanks for checking out my story! I've heard a lot of accounts of people jumping from one medication to another, which is part of why I haven't gone that route. For me, it's 5 years without an exacerbation since changing my diet and going on Vit D, so I'm hopeful. Hang in there!
I had symptoms 11 years before dx in 2009. I've never taken any of the MS medications. I do take vit d3, fish oil, coq10, and magnesium. I try to eat clean. 14 lesions on the brain and dozens on my spine- all but two were on my scans already at the time of dx. I was told the same thing in regards to becoming wheelchair bound and such. So far that is not where this journey has taken me. It's nice to hear your story. Be your own advocate and continue to make educated decisions!
I like the way you talk about it all, Michelle. As the years tick by and I continue to feel vital and healthy, I've found others (like you) who are doing well off the meds. Hang in there and stay strong!
Michelle Scott Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
I'm 12 and dad has been talking about being numb so I have been looking through stuff ,I'm going to advise him to get checked
Good idea! And keep in mind that it can be a lot of things
And don't worry too much! Numbness is not that uncommon ... he's gonna be good! Hang in there
Creamiclover 78 good for you for researching this for your dad. I hope his symptoms just disappear as if he never had them. Take care.
Agreed. Super generous to do this work and research!
Hi sweetie 😊
I was doing some research on MS. Look up the link between MS and gluten. It's been also adviced to cut off processed sugars. Those patients actually managed to recover. Good luck 🍀
Thanks for the great video and telling your story! I'm 66 and I had my first "episode" at 29 -- woke one one day one side went numb and could''t feel heat or cold or a pin prick and the other side was in pain. It was before MRI's so they thought first ms, then transverse myelitis. I recovered about 98% in year after steriods and kinda forgot about it, but then started getting sick from fragrances, and became chemically sensitive to things that didn't bother me before. I have t really stay away from pesticides and strong checmicals.. Then 12 years ago I had pain in my feet and got the diagnosis of ms (had the horrid spinal tap which was a nightmere especially afterwards). The nueuros (and I've been to 6) feel the ms activity began when 29. I think even with what seems like low success rates, being on an ms drug is a good thing in bag of arsensals. I can understand your position to just get used to living with it, as you say, for a year and then decide. I have the same reservations about all still even though I take Copanxone which according to all the neuros I've seen is the safest with fewest side effects. I've been on it off and on (now on when more lesions appeared a few years ago). The thing is that the ms activity in the brain (as I understand it) continues in the white and grey matter and spine whether you feel symptoms or not, and whether it can be seen or not. This is a progressive disease. It gets worse over time -- can be slow can be steady can be really fast -- just I think things can't get any worse they do. Everyone's different in how it progresses, but it does get worse over time which is the big fucking bummer. Like you, I've had periods of feeling pretty okay, then been hit bad, recovered, but the last one I didn't recover from -- a pain that migrated from my feet upward and it's been 12 years of intensifying pain in the whole lower body and has effected my digestion. So I'm kinda with Junior here in terms of encouraging you to consider Copoxaone. And medical cannabis is really helpful for pain. But certainly is just part of a bunch of things I do for it. Check out Montel Williams' arsenal. And there are these Research Updates I get from the MS Assoc of America that I read with great interest. The studies on salt are interesting. You can ask to be on their mailing list. Anyway thanks for posting this! We really help each other with these videos.. maybe I'll make one! Take care my comrade.
Hey Laurie! I appreciate all your thoughts and ideas ... plus, hearing your story is pretty powerful. You've been living with it through quite a few changes in the medical community. I know what you mean about the disease being progressive and degenerative, and I also know that nerve and brain damage can progress over time without one really noticing it. That certainly is a scary thing. With that said, I haven't seen any longterm drug trials that prove a longterm drug therapy helps. Maybe my reading of the literature is partial -- I'm sure it is. Anyway: best of luck to you and it's great hearing your story! Take care, Spencer
I had my first exacerbation i 1978, and was not Dx until 2004. Took Copaxone for several years and finally decided to quit, for several reasons. Just had my worst exacerbation since the first one, beginning last December. I fell, my legs went numb, I could not walk and I am in a foreign country where MS is nearly unheard of. But the doctors I saw knew enough to treat me with steroids and vitamin B shots. Also increase vitamin D, and four months later, I am nearly at my base again. I say nearly because I still have extreme fatigue that makes me have to sleep during the day, along with the usual tingly legs and arms, muscle spasms, pain in my legs, and balance problems. But I am thankful to be walking again. I do not know why I wrote all this but it felt good to be able to get it out here. Thanks for reading.
That sounds challenging, but also kind of terrific since you've been living well with the disease for so long AND you took care of it in a foreign country. Way to go! Keeping those D levels up is critical and usually easy to do ... hang in there and it's great hearing from you. !
@@SpencersMSStory Thank you for your nice reply, Spencer. Yes, we do have to look on the bright side and I am thankful to be able to walk again, unassisted, and to have lived well with the disease for so long. I am sure you understand, though, the fear that comes with every exacerbation, not knowing how much function you will be left with when it finally subsides. Well, it was helpful to me to just have a place to write about this. Thanks for your encouragement and for your site. I wish you good health, always.
So glad to see your video. I've had symptoms for over ten years. My doc thinks I have MS but my MRIs don't show lesions so not officially diagnosed. I've been on the Swank diet all this time. It took 18 months but my symptoms finally went away. ( numbness, tingling in arms and legs, extreme fatigue, cognitive deficits, trouble finding words or else substituting the wrong word, etc.) these all still return if I get tired or stressed out. My doc told me he doesn't think much of the dmds, so I am really happy with the lifestyle adjustments I've made. Of course, I totally respect people's choice to use the drugs. I know they work well for some. I look forward to seeing how you live with all this now that you know you have it. I wish I knew for sure one way or another but I've learned to live with the ambiguity.
Lisa Tuckett hey I'm on doctor john mcdougall's diet it's been 3 weeks now haven't noticed any symptoms improved did you really cured MS? did it really took 18 months or you get better slowly overtime? i have try lots stuff hoping this ganna work.
Hey Lisa! I'm planning to post a follow-up to this video ... as I've been doing quite well with careful attention to diet, rest, exercise, vitamin D levels, sleep, stress levels, and more. MS is a highly variable disease, but there do seem to be a lot of us doing well without pharmaceuticals
Hey Justin -- in my readings, and here I'm mainly thinking about George Jelinek's book, it seems that diet can take 1-2 years or more to truly stabilize the tendency of symptoms. So that's to say that dietary changes likely take a good long time to be actually felt and experienced.
Lisa Tuckett please consider Lyme disease. Please look it up. It mimics MS.
Lisa Tuckett Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
I was 44 years old when I was diagnosed with relapsing and remitting ms ,while living in Ireland. Found out when I came back to states and saw a Ms specialist I had been misdiagnosed for many years. I was showing signs of ms since I was 23. Heat is my worst enemy, numbness, blurred vision. I'm currently not taking anything due to side effects. Best thing to help me was cut out any foods that are processed or have preservatives.
We have a lot in common. Hang in! I also find the Anti inflammatory diet to help
hey man i love your story and braveness'
i started having my first symptoms in the summer of 2009 when i was 17 and i was bedbound for about a year. i dropped out of higschool and moved in with my grandmother. i was pretty much in bed for that entire year. a really goid friend of mine would come hangout with me and bri g me food and stuff. i had multiple bloodtests and ekgs ecgs mris full pa el blood workups and everything cameup clean. everyo e in my family ruled it as depression. around the summer of 2010 my symptkms got alot better bcs i was off of my initial begging flareup so for about a year i was good ive had my flare ups last between a year to 2yrs with feeling good or decent rather about 6m-12m anyaaya fastfoward to november of 2018 i aas finally diagnosed with MS almost a decade later. the releif of being diagnosed with slmething i k.ew i had all along made me and everyo e around me feel alot more comfortable.
It’s good to know, right! Here’s to good health for us both! Take care
Ah, good to hear an another story where all the scans come back clear and still the symptoms are considerable.
I was officially diagnosed in 2012, but much like you, I've had symptoms for the last 12 years. You are the only person I've known who has experienced hypersensitivity. Mine is to sound and touch (mainly metallic objects). Thanks for sharing.
Nice to know there are similar stories out there! The hypersensitivity is nuts. I'd call it a super power if it wasn't so rough
Me too??? I haven't had MRI, they're calling it fibromyalgia. I'm scared.
I have had that "touching cold" was feeling like touching perma-ice. It improved.
I am happy to get an explanation, because I was wondering if I was just imagining it.
Thank you for sharing metaspencer (my husbands name is Spencer!)
Someone I know had many MRI's just like you and each time, they found nothing. Eventually she decided to pay and see a top specialist in MS. He took her many scans and magnified them and on doing so he was able to see hundreds of tiny lesions that couldn't be seen with the naked eye.
MS can take a long time to diagnose and some people never get diagnosed but instead get offered a diagnosis of FM. I say, if the symptoms fit, keep pushing for answers.
I'm glad you did.
Wow, that story about the scan is pretty crazy. I've had multiple neurologists read my brain scans and see different things, so there is also the interpretive filter. I agree with you about FM and some of the other syndromes. Thanks for the note and for checking out my story!
@@SpencersMSStory No, thank you. I've subscribed and liked your channel :0
I was diagnosed last year with ms and am 50 years old. I'm on the Wahls diet and am doing really well on it so far. I'm not too mobile but I'm praying for some results. Good story and I love your confidence ❤️
Hang in there! I'm 52 myself and haven't had an exacerbation in 7 or 8 years after following the diet and getting my vitamin D up there. Hang in, stretch and move as much as possible, and stay positive. You've got this!!!!
@metaspencer Thank you so much for the encouraging words. I have a very bad back injury as well im trying to recoup from. I have always been such an active guy my whole life so this certainly an eye opener. Again, thanks for your kind and encouraging words 🙏
@@famasmaster2000 Oh dang, that back injury sounds rough and with MS it can be hard to tell what symptoms are from MS and what's caused by something else. Anyway: hang in and rest up!
Wow brother I'm sorry to hear this happening to you. You look good and wouldn't have ever thought you had any issues the way you tackle you prison bus videos you are a go getter for sure.
Stay strong my friend.
Hey, thanks for the kind words and for checking it out. We all have something or other, I suppose ... and you're right: I'm doing pretty good! Life sure is sweet and I try to enjoy it. Cheers! :)
Thanks for telling your story. I'm 35 and have had symptoms since I was 20 and still don't have any answers. I saw a neurologist at first which put me through the ringer she gave me 4 spinal taps the first one she tried to do herself and my leg started swinging involuntarily. She blamed me saying I had a low pai n threshold. The the other three were done via xray by a radiologist and went perfect but it had to be repeated 3 times bc the lab kept losing the fluid sample. I recently had a MRI of my brain without contrast that show a lesion that was nonspecific. So right now I'm just kind of seeing my primary and that's it bc I'm terrified to see a neurologist. I did get a second opinion once and was told it was all in my head. At the time of the consult I was asymptomatic which didn't help.
Wow, what a hard story. A neurologist at s big city hospital MS clinic should be better... they only knew for sure with me with spine scan. Most important thing: stay positive! Eat well! Rest! Etc... hang in
Thanks for telling your story. Its one of the best ones i heard so far. Especially the part that your brain scan was clear, so they said you don't have MS.
My 1st visit with a neuro who hasn't even looked at my MRI said it wasn't MS. But in the report it says i have a lesion, T2 flare i think. Yet the neuro says that its age related but he has no other explanation for all of my symptoms.
Thanks for the kind words, and my thought for you is pretty simple: hang in there and be patient. I've found that doctors, while they try hard, can't always see the whole picture. So time and multiple visits can help. All my best!
Hi, loved your approach to you ms. So positive and rational. I was diagnosed in '88 but like you had symptoms for years prior to my diagnosis. No disease modifying drugs back then; only Pred'lone as a treatment for relapses which I did take. Tried to go treatment free until about 6 years ago as each MRI showed new lesions. On my third protocol now as my annual MRI does continue to show additional active lesions. With that being the case, I'm now on the 6 monthly infusion which hopefully will stop any more damage.
I've continually adjusted my diet protocols too, giving each a good two year trial and can conclude that the Keto diet has really helped my crushing fatigue. None of my diets thus far has stopped new lesions forming nor has any drug so far! I find this revelation remarkable. I'm now having MRI's every six months which should hopefully show fewer lesions after being on the infusions, by that time, 12 months. It would be great if they work as even after having MS for over 40 years with multiple lesions I am still walking.
Good luck to you! 😃✌️
I'm sorry to hear about the continued disease activity ... darn MS can be a doozy and hard to predict! I'm hopeful, as are you, that your current treatment mellows things out for you. Hang in there, stay positive, etc. etc. In my experience the disease can simmer down as quickly as it heats up, so fingers crossed for you! :) As for me, I've been in a nice relapse for 3 years now ... it's been good to not have new problems all the time. Take care!
You should have a methylmalonic acid test done, which will show your B12 tissue level. A B12 blood test is no good, you need the M acid test. The B12 can be low at the tissue level and never show to be low in the blood. Many people have a MTHFR defect where they can't convert B12 to the usable form and it's never absorbed by the cells. If you have this defect, you'll need to take the methylcobalamine B12, which is already converted for use in the body. A low B12 tissue level can cause brain lesions like you have. It mimics all the symptoms of MS and is often misdiagnosed as MS. My brother suffered from a low B12 for years, but thankfully this internet came along and I had access to all this information to figure out what was causing his problems. When the B12 gets low at the tissue level, it elevates the methylmalonic acid, which eats the sheaths from the nerves over time. The high M acid also blocks enzymes in the urea cycle that convert ammonia to urea. When the ammonia becomes elevated it also causes demyelination of the nerves and brain lesions. Our family comes from Nordic ancestors who immigrated to the US in the 1800's. People with ancestry from Sweden, Ireland, Scotland, Norway, and other nordic countries have a high chance of having this MTHFR gene defect where they can't methylate B12 and their tissue becomes low. Anyway, I just thought I'd share this information with you and the others underneath your comment. It's a shame that doctors don't ever test for methylmalonic acid. Most of them probably never even heard of it. If they do test the B12 serum levels, and it shows normal, they rule out a B12 deficiency, when it could be low at the tissue level. My brother's B12 blood test showed normal while at the same time the tissue was extremely low. His methylmalonic acid was so high it was almost off the chart. Once the B12 is restored to normal, it takes about 2 years for the body to reform the myelin sheaths that were damaged. I was just curious if your doctor ever did a methylmalonic acid test?
I've been impacted by MS related events for 10 years and diagnosed 2 years ago.
Well hang in there! I hope you’re well
Stay Active. I had hep B vaccine which started it. Fast forward and my weakness started after I broke my foot and three years later I need cane due to limp. I was formally diagnosed last year. Now I am making efforts to find something- the best MS diet that will work with me. I hope to develop improved strength with my walking and energy. I now I can see how gluten, sugar, hot and cold affect me. I’m not keen on meds since a vaccine started this in the first place.
I’m hoping you recover! Those darn vaccines can jumpstart the immune system for sure. Be well!
Hi Spender. Good job on the video. I have had MS for 18 years, was using a wheelchair for four years and had numerous relapses until I started Tysabri in November of 2006. Since then I walk several miles a day and have not used a wheelchair, crutches or a cane since 2007 and I have not had a relapse in nearly 10 years. I am JCV positive, but got a low titre, but I have never been scared of PML.
Hey Vern! I also walk daily, which I think is a great way to keep active. My JCV titre is far too high to risk Tysabri, but I've heard many good stories about it (like yours). Hang in and thanks for commenting!
Vern Beach my mom also used tysbari. but aftr 20 doses neurologist stop it ... now she takes nothing fr ms. bed ridden and become epilepsy patient also
Oh, Humera, I am sorry to hear that. I know a few people here that have been in the same situation (doctor's would stop giving Tysabri after a few years). Some have switched drugs, others have switched doctors so they can still receive Tysabri.
+Humera Arshad ... That's rough. Tysabri can kill, enabling opportunistic brain infection.... this is why the doc stopped it
Tysabri also allows people with MS to live the best quality of life they can. Also, people get killed walking across the street, too.
Since I just finished my HCA course, I like learning more about diseases and try to understand or to be able to listen to to those effected by it without making them feel bad or awkward. Thank you for sharing and your video inspires me. I say it is your body, you have the right to choose and someone might choose a different route, I think since you are the living it, and I say this with respect to all who are going through this, do what you think is best for you. God bless you in your journey! All the best to you!
Thanks for the sensitive comment -- I appreciate your perspective.
“I’m not really into brain infections”. Lol. You’re funny. God bless you and I hope you have a complete recovery.
Thanks! 4 years now without new problems so doing good 😀
I've watched so many
My M.S. Story videos and they all scared the crap out of me. Yours did not. I'm taking the same approach as far as meds go. In my gut I feel like the drugs will make everything worse and when I'm prescribed them I fill them and then just don't take them. Stress MAKES EVERYTHING WORSE. And so do heat. If you can take a room temperature shower (may be a touch warmer than room temperature). I am not a doctor and I am new to this (1 year into diagnosis) but so far I don't feel I need any of the medication. Of course that could change but knock on wood I hope not. Thank you for the video. Sincerely,
Axel Rosey
Thanks for the support and for checking out the video. I'm now 4 years without an exacerbation and no interest in the meds ... I think my anti-inflammatory diet, vitamin D, and low stress help a lot. You've got this! Hang in and stay strong
You inspire people. And that means a lot. Thank you very much for these. Take care. You know best😄
Thanks for the kind words -- it is much appreciated!
Thanks so much for sharing this; it is so much more helpful that most people will ever realise. I was misdiagnosed with something else years ago but knew "something was up" as I never got better. Only just recently diagnosed correctly.
Hang in! That misdiagnosis thing can really throw you for a loop ... it did for me and has been hard to let go. Be well
thank you.... I refuse medication... glad to know I'm not crazy 👍
And I'm glad to know there are others out there going their own way. Thanks for the comment!
Latrice Lovelace Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Latrice Lovelace GOD Bless YOU!!!
In all honesty i think the side-effects are worse than the symptoms i already experience, i wont start medication till i fall or lose sight.
@@laurah3282 Thanks for the info, ill check it out.
Yesterday, I began getting diognoised for rr ms. Watching the testimonial of all you has been life changing on so many levels: courage, clariying, motivation, eye-opening. Thanks. I vasilated be tween thinking I had an amazing immune system to questioning my mental health lol. I always "got better" and pretty much forgot about it between episodes.
Wow, Nancy, that's pretty intense. Just yesterday! Well, make sure to breathe and relax and rest and all of that. In my experience, all the new info of diagnosis and whatnot took a lot of time to assimilate and get comfortable with. Hang in there!
metaspencer thanks spencer; I've been dealing with symptions for 20 some years. This goaround, I had multiple issues that could not be ignored. I too believe medications may prevent a future full of regrets. Your Immune system weaken with age. Take care of yourself.
Nancy
Nancy Southerland Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Thank you for your video I have MS also I was four and a half years before I was diagnosed I've been on a roller coaster similar to yours and if and have not accepted medication as of yet thanks for the video
The rollercoaster is a tough one! For me, things have settled down a bit in the past two years, which I'm grateful for. I'm hoping you find some similar stability. Be strong!
Brother don't worry about it being your 3rd take, thank you so much for sharing your story!
Thanks for checking it out
I am happy problems with my eyes, having problems with the power in my legs and now waking up at night with my both hands numb but paining.
Yikes! Rest up and get that inflammation down
Very helpful, especially for those in limbo. Thank you for taking time to do it and you get it really well. Go with you gut. Meds kill (just to negate some of the drug pushers)
Thanks for checking it out. Take care!
My brother tried so many diets, so many drugs and supplements and nothing works. He's so dillingent in all this that it breaks my heart to see he is getting worse. I wish his MS went like yours...
I’m sorry to hear! The disease is very different for us all :(
I'm 54 and having a lot of these symptoms which have been coming on a long time
I'm sorry to hear that you're struggling! There is a lot to take in and sort through, which can take some time. In the meantime, most people would say that making sure your vitamin D levels are in the healthy range is pretty important.
Same.
just got my mri back. I have ms. I am so crushed. This explains all the weakness in my ankle foot and numbness and back pain and my eyes when I was younger I went blind then got my eye site back. I had 2 years of IBS then it cleared up like nothing. Doctors found nothing! Eyes were oral migraine, the numbness and weakness in right foot was pinched nerve. My tongue tingles for about a year and this is what lead me to ask the doctor for mri scan. I have lesion in my brain and my tongue is partially numb and its horrible. I am so crushed. Had to call into work and tell them I cannot come in and spend the whole day in tears.
Oh my. I’m sorry to hear, but at least you have some answers. I’d strongly recommend an anti inflammatory diet ... take some time to think about things and stay positive. Hang in there!
Your braveness is inspiring!
Thanks!
Usually spring/summer time, sound like allergy to me , check Dr Terry Wahl and investigate IgG food sensitivity test... Tell me please are you allergic in general ?
Another observation, Wahl was also vegetarian.. Any connection to make?
Two people out of millions -- I'd say there is a lack of data to draw any conclusions there
Yep, I've checked that out. Thanks for the comments!
You are on the right track. Do not let anyone tell you to take that medication. No one has anything good to say about them
I appreciate that! Thanks
"you know, people's butts go numb!"
haha. that was my logic, at the time. :)
Don’t they though? Like if you’ve been sitting a long time?
mine lol
Idk if I have Ms yet haven't been diagnosed but I haven't been working I'm a stay at home mom and that's my logic.. like maybe I'm numb because I'm not as active as I use to be and I'm mostly sitting on the computer or whatnot..I'm scared though
Hang in. There are a lot of potential causes of numbness. Keep your options open
Omg... my butt went numb in my 30's a few times... I blamed it on the cold, being on my feet lots, and just being weird!! Holy Cow!! I hadn't even remembered that one. Thank you soooo much for doing this vid. I have been really sick for about 6 yrs, no diagnosis, and just started watching these vids. I think they are helping to save my life! Ok, that's as far as I got, going back to watch the rest.
Hang in there! Just know that many of us with MS are doing quite well on an anti-inflammatory diet and vitamin D3 ... be well!
Thank you for sharing! What a crazy rollercoaster ride... I'm glad to hear that the healthy lifestyle is working for you. That really encourages me to stick to my dietary beliefs to stay well. Thank you for your positive attitude towards this riddling disease - it helps :)
+Life of Seb And _your_ upbeat attitude has done a lot for me as I encounter each new day. So thanks!
In 2010 i suddenly had double vision, vertigo, numbness on legs ,dizziness
Went in casualty n did numerous tests
Nothing found
Put on meds n got better
Now 2022 i have ms ....more symptoms
Diagnosed by a prof of neurology
N put on injections ....
Still struggling cos symptoms have been not attended to earlier
Blame doctors....
Sounds tough! As you know from my video, it also took me many years to get a diagnosis. Everyone takes a different path but I'll just tell you that for me a strict anti-inflammatory diet has kept me from having any more exacerbations. I have many more videos about MS linked here ... hang in there Shireen!
One year after posting this video, I made a follow-up: th-cam.com/video/qhQLzv67Nlc/w-d-xo.html Two years later I posted this video: th-cam.com/video/7I0ujnOqDfk/w-d-xo.html Three years later I posted this one: th-cam.com/video/28CJb48KAjw/w-d-xo.html
dude - your ms is caused by an infection in your jaw- usually after an extraction - dentist do not remove the ligament which stops the site healing then goes necrotic.
implants and root canals cause infection aswell.
infection also happens if your wisdom teeth dont form or form properly.
you need to find a hollistic dentist and get them to open up those sites and clean them out and remove soft bone.
i had primary progressive ms and once i had my infections cleared out all my lesions vanished and all my pain stopped in about 2 weeks.
my eye sight returned in about 3 months, and all the brain lesions went away.
numness went, need to urinate returned to normal, no more sexual dysfunction and no more constipation
Its in your mouth dude - dont live in pain
Interesting theory. I’m doing great and have no problems... glad you’re well too!
its not a theory..
search for graham munroe hall , or nico jawbone lesions, dental cavitations - they are fact - your standard high street dentist doesnt acknowledge that they exist as they arent trained on these or to remove the periodontal ligaments but its been in the medical literature from 1920 by gv black
Thank you for this video. I'm going through a bunch of tests right now because I've had dysphagia now for almost 8 months. One of the things I'm getting tested for is ms. Watching these kinds of videos really convinced I do have it. My symptoms line up so perfectly with others with ms. It's still up in the air if it's the case. But these videos really help me not be as scared as I was when they told me they would be testing for it. And even if I don't have it I find hearing people's stories interesting and helps me understand those who have it. Google makes me sound really scary. But even people at their worst with ms are really positive people. I want to be positive as well no matter what it is causing my dysphagia. At the end of the day. These videos just help me be more positive about my medical situation no matter where it goes. Thanks for sharing. It helps a lot.
You sound strong and positive to me! For me, getting a diagnosis hit me like a ton of bricks. But now, these many years later, I'm doing great and it's just one more part of my life. So hang in there! And be well!
You can't lump MS into 1 group. There are 4 types of MS and some are MUCH worse than others.
Primary progressive seems to suck. RR is “better” in some ways. Good point
@@metaspencer yes, that is correct. You can see the end of Annette Funicello's life with progressive MS on TH-cam.
@@thomasjensen6243 Yeah too bad knowledge about the power of anti-inflammatory diets isn't more widespread
Thanks for sharing. It's not easy I know. I'm learning to appreciate each day that I'm mobile.
I'm 39, had my first intro to MS in 2006 with O,N in my left eye. Sent me completely blind & then back to a somewhat reduced state over about 4 months. Parts of my face also went numb as if I'd just had a "local" & a tooth filling.
It left me alone for a while, then in 2008 my right eye did the exact same thing.
On a side note, I've also had a condition called "swimmers ears' which due to infection made me deaf for 3 weeks. Talk about spending a day in someone elses shoes!
The first 2 episodes & the subsequent MRI's showed no signs of plaque but a lumbar puncture did shine positive for immunoglobulins. So it became a waiting game.
Now here we are, 2016, just had my 3'rd MRI in 11 years after tolerating months of fatigue , aches, headaches & with my right eye clouding over, I now have the diagnosis of plaque in the 4'th quadrant.
It's funny, at the same time that diagnosis scared me, it gave me the chance to relax as now I have a reason for all the symptoms.
For the past 5'ish months now my physical self has diminished a bit, but to due my immune disorder I also have Ceolicas disease which has seen me shed about 25kg (55 pounds), I've radically changed my diet to avoid all wheat, barley & all it's derivatives.
Some multi vitamins are on the cards too, but my diagnosis is so fresh that I'm yet to go back to my specialist to follow up the scans.
Basically, I feel like an old man in a fit body...that make sense?
Some days are better than others, but I live everyday with some type of physical or cognitive fatigue. If I want to plan a big day, like spear fishing with my son, I'll take it easy & eat well for a couple days leading up.
Some of my symptoms are weird as hell too, half a numb penis & anus,
numb ass cheeks,
numbness deep in the leg muscles, this also causes "restless legs" & very uncomfortable.
singular nerves in my heel ligaments twitch,
random muscles will visibly twitch,
I get restless if I either sit or stand for too long, & this includes my concentration, mood & cognitive reactions. Basically, if I'm somewhere or with someone for too long, I get cranky! Mornings suck too.
I smoke pot to get to sleep quickly & efficiently. Helps me sleep through the night. I sometimes get flashes of light with my eyes shut, as though someone has shone a torch at me...real enough is it that I open eyes to see what's there!
No: 1's & 2's are still normal, with exception to bowling people over to get to a loo quickly on occasion.
My mobility has slowed a bit, but I deliberately do things like look down when I walk, just to be sure I won't trip, as with most MS folks I am very sensitive to pain & cold, Love my heat though for some reason?
I mess up my written words too & I often smell things that aren't there.
I firmly believe that I have lived with this immune disease way prior to 2006. I may have been born with it. I was born with eczema & food allergies, so the connection is easy to make.
I'm going to stay clear of meds if I can. I think the right diet is the go for me.
What you describe is all unique, and yet it connects up with so many of the experiences of others (with this disease). All I can say is hang in there and think positive! Even with the challenges, you seem to be doing pretty well!
Tasman Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
Omg 1/2 of my vagina goes numb. When I told my dr he looked at me like I totally made it up. I also have celiac disease. Each day is challenging. I also have gluten ataxia.
Being gluten free with MS is the way to go! Darned numbness can hit anywhere ... totally annoying. Hang in! Stay positive!
Very curious about your food allergies... did you develop them over time?
Thank you for sharing. You start with the exact thoughts running through my mind.
+Strat Cat ... nice of you to say
My first symptom was when I was 31 I’m now almost 48 and newly diagnosed. Crazy how much gets missed.
Oh wow, that sounds all too familiar. For me it was kind of a relief to finally get the diagnosis, but at the same time super challenging to come to terms with it. Hang in!
Hi, just saw your video. I also have had ms symptoms for 17 years. I was diagnosed in Dec of 2015. I had many symptoms throughout the year s and doctors chalked it up to many off things from anxiety disorder to nerve pain in my face from a dental visit. whatever.lol. the first symptoms came around when I was out in the heat and I couldn't talk well, walk well and couldn't use my left arm. through the years these symptoms would come and go. i had problems with vision, tremor in my right hand and more. spinal tap have always showed nothing, but my MRI shows lesions more on my cerebellum
Wow, we have such similar stories!
Hey Spencer, I came across your channel with one of your current projects, "The Prison Bus" conversion. Looking thru your channel, I came across your MS story and became really inspired with your lifestyle and your insistence on not taking the medicines. I think that was a wise choice and truly love that you are doing a self treatment with healthy living, being active and controlling your environment and stress!!! Keep doing what you are doing man, and I hope your exacerbation will decrease!!!
+Marshal Pearson ... thanks for the kind words! All has been very good with me lately, and your recognition means a lot
This was so helpful. I suspect my 7 yr old son has MS, we're in the beginnings of finding out what's wrong. I never considered NOT doing medication while pondering all the possible outcomes. I really appreciate your story and sharing what you've experienced so far.
Oh my, good luck to you as you seek answers. If it does end up being MS for him keep in mind that vit D3 and anti inflammatory foods will help. Hang in there!
What are his symptoms?
Wow man. I just came across this video. You work so hard, but work is also exercise. I sure hope you continue to be able to enjoy quality of life. Life is short. Make the most out of what the Good Lord has blessed us with. Take care of yourself buddy.
Life is short for sure. For me, having a potentially debilitating disease has given me focus and an appreciation for the everyday. I saw that you were watching some older videos and thought you might run into this one. Thanks man!
thank you for sharing your story . good luck for the future. I think retreat your mind would help as well to lower the stress level
Yes, the mind has taken the most work. Thanks for you comment
metaspencer you are a well determined person and nothing will happen to you . Take care.
Thank you for this video. I have a lot of MS symptoms and my mom has a legion on her C2 but never diagnosed. The neuro I saw last week said sometimes people have chronic pain and we don't know why *eye roll*... But he did order me an MRI for head and C-spine (wish they'd do whole spine) for this Friday. I'm worried it wont come back with anything and they won't know what's wrong... I'd rather they tell me it's MS or something else, rather than "we don't know, your MRI is clear". So to know that even if that happens, down the line they might figure it out or finally see something and give me some sort of answer. I'm in the military and am already looking at discharge for PTSD, so I'm hoping whatever is going on physically with me can be figured out before my med board so that I can continue to get decent treatment after I separate and/or get medical retirement.
Hey Andrea! First off, good luck with those scans. I hope they are clear, though from what I've read scans only tell part of the story. What they reveal is partial. I find MRI's a bit awkward to sit through, but super worth it for whatever info they provide. That situation you're in is pretty familiar to me: you're in a spot where you want to find out what is going on with you, but at the same time it would be nice to hear good news. I wouldn't wish MS on anybody and certainly hope you don't have the disease. With that said, whatever the results are I'm hopeful that you can handle it and adapt. Anyway: hang in and thanks for checking out my story! I have been posting updates to this video each year, just so you know.
metaspencer I’ll check out your channel tonight... I’ll be at home alone anyways because bf is at work and I hurt too much to drive the half hour to and from to pick up my baby girl from her daddy’s...:-(
OMG - you are describing my doctor/neurologist experience s to a T. My neurologist said not MS because my brain lesions aren’t lined up... meanwhile I’m just living with symptoms.
I've never heard about lesions needing to be "lined up" with anything ... that sounds very odd. Sadly, many docs seem to work outside their specialty areas. Seeing a dedicated MS specialist at an MS clinic, as I have a few times now, may give you some more answers. Anyway: hang in there!
SheLikesSteel same for me
Wow, crazy
Find another doctor.
I have “scattered tiny lesions throughout my frontal lobe” which in the radiologist report stated could be a sequela migraines. I’ve had headaches, mainly due to vision problems. My initial issues were blurred vision especially in the afternoon when I’m fatigued. Thought I needed glasses. Went to the optometrist and he said there were some abnormalities in my pupils and wanted me to see a neuro ophthalmologist. Had a brain MRI that was normal. Now 4 years later I’m having tingling/numbness randomly and the most irritating being constant muscle twitching is my legs mainly, second in line being my face and then occasionally in my abdomen and arms. Also right thumb tremors. Waiting to see a neurologist.
I started having these types of issues since 14-16. I'm currently 25 now. It's getting worse and my legs constantly tingle. Spine tingles. Arms tingle.
Have you checked your vitamin d levels and switched to a strict anti inflammatory diet? Works for many of us
I have MS as well. Ty for sharing.
Hang in there!
I'm at 16 years and at the end of my rope! Since my husband is asleep, I'll watch you tomorrow. I cannot WAIT to see what it took you to get diagnosed! Teri Garr took 26 years. THAT WILL NOT BE ME! God Bless You brother!
Hang in there and take things slowly. You'll figure out your own personal situation, whatever it is. All best!
metaspencer Haven't I already? 16 years is a long time. I'm STILL trying to get my Kindle to play your video! It's ironic we've opened up a dialog w/o my having been able to hear you yet.
Yeah, I usually get to chat with folks _after_ the video plays. But whatever! Like MS, life can be pretty unpredictable. I'm in year 18 of symptoms and doing a lot better, so I'm getting more and more optimistic! Hang in there.
Thank you so much for sharing!
Hey, thank YOU for checking it out! I'll be posting a "one-year-later" video in a few months, so stay tuned.
I’ve only watched one of your videos but subscribed and will be watching more. I really appreciate hearing your story and to be honest it has me a bit choked up. I have a long list of MS symptoms that have been occurring for several years but for the past 18 months they have been severe and when they all of the sudden peaked and I got a bunch of new symptoms an ER doc suggested seeing a neurologist and considering that it might be MS. I thought she was nuts until I started doing my research.
Needless to say, I am still undiagnosed (2 brain and upper cervical MRIs later) and feeing a bit crazy dealing with all of this. However, in so many ways I feel vibrant and healthy like you described yourself. Sometimes I feel almost punished by the mainstream medical field because I take care of myself therefore my condition isn’t bad enough that there’s help for me...?? I am a fitness instructor. People look at me all the time and say “but you’re so healthy and fit”.... I know this is common with MS people.
I could go on and on but basically what I wanted to say was “thank you” for sharing your story. These stories make me feel less alone even though I am undiagnosed.
Oh wow, great to hear from you even though it's a story of being stuck in a kind of limbo. I guess you don't want to be diagnosed but probably also feel like some kind of solid answer would be reassuring. I can completely relate to so much of what you say ... Hey, keep in mind that I have follow up videos posted each year: and it's not been a downward spiral! :) th-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html?view_as=subscriber
Keep doing your fitness stuff and staying healthy. The docs might not know what is going on with you, but you can keep the diet and vitamin D levels rolling along in great ways way ahead of the docs. Anyway: thanks for reaching out with the comment and BE WELL!
metaspencer thank you! I am also a holistic health coach (masters in health psych) so I have gone down many many roads trying to figure it all out! Amazing what doctors don’t know or investigate 🤯
Inspirational ❤️ you give hope 😢
Thanks! Yes, much to be hopeful for!
Dude your story sounds exactly what I’ve dealt with for years. I am in the process of diagnosis- seeing a neuro on Monday and praying for some answers or at least further testing. I was hospitalized about a month ago for 5 days, and for some reason they absolutely would not do a scan on my full spine. I literally begged. I couldn’t walk until the 4th day, and have been using a cane and walker ever since. I’m not giving up.. they ruled out other possibilities such as Lyme, lupus, rheumatoid.. but I will not give up this time. Praying for you that you have a positive outcome with your decision to go the non medication route 🙏🏼 thank you SO much for sharing a bit of your story with the world!!
Hey Kim! Good hearing from you and hang in there! It's been about 7 years now since I was diagnosed and I've been DOING GREAT on an anti-inflammatory diet and vitamin D. Get that vitamin D checked and good luck at your doctor visit! I hope you can get that inflammation down soon
@@metaspencer thank you for your kind words! That’s wonderful to hear, and thank you again! I may need to pick your brain in regards to the anti-inflammatory diet. And again, thank you for sharing your story with everyone. It really helps me to feel like I’m not alone when I hear such similar stories 🙏🏼
@@metaspencer also yeah, my vitamin D is low, so my pcp told me start taking vitamin d, b12, and calcium. Here’s to hoping we all live a long, happy, and HEALTHY life 🙌🏼🙏🏼
@@kimsanton3 I'm always happy to chat and have more MS videos here: th-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html
Thank you so much for sharing your story. I'm currently going through the process with being diagnosed. I've had 2 flair ups in 2 years almost exactly a year apart. Both lasting around a month. From what I've noticed they're similar but progressed. I've had the worst luck with medical attention. I was wondering; if anyone can answer this. Would it be better to get tested during a flair-up rather than not?
Getting scanned during a flair might be more visible if you take the glandoliniun contrast agent, but MS lesions will likely show up either way. If you suspect MS most people would agree to get your vitamin D levels up. I’d also suggest an anti inflammatory diet which can’t hurt. Keep positive and hang in there!!
They need to do the spinal tap during a flair, the MRI show better during a flair also.
I was diagnosed in May 2021. After losing some vision abilities in my left eye. Started Ocrevus in Aug 2021. Trying to stay positive. Currently symptom free. Next MRI is Aug 2022.
Symptom free is great! Way to go! It took me a few years to come to peace with the diagnosis, so I'd say take your time. I've been posting videos about "my story" each year (they're linked here on the page) and things have definitely improved. So I'm hopeful for you! Be well
@@metaspencer I wish I could say I'm at peace with it. There are a lot of emotions that I feel. I am a mother and wife with two kids under 10. I struggled a lot with thinking what will my future be like? I'll be able to see my kids graduate to see them grow to see the people they will become. All of this is going on during the height of the pandemic so no support groups were working. I'm still trying to find a support group and I'm going to talk to my doctor about what my next steps are as far as my mental health.
@@sarahs.9292 Oh yeah, those challenges and sentiments are very familiar. I found a few support groups on Facebook (of all places!) to be pretty good. For me, and I know everyone is different, I've found a lot of relief and positivity in knowing just how many people are doing VERY WELL with MS. Remissions can be long and even permanent ... disease activity has been minimized for many of us. Hang in there!
@@metaspencer Could you share the Facebook groups?
@@sarahs.9292Oh yeah, absolutely! And I may have talked about them on my MS channel which is here: th-cam.com/channels/CiKv0OKFoJkMBLYheSaKvw.html ... the groups on FB I can think of are 1. Best Bet for MS and 2. Multiple Sclerosis and Exercise ... I think there is also one called "Multiple Sclerosis Support Group"
i was diagonosed with ms in 2013. I have refused the ms drugs preferring to treat naturally.... been symptom free since feb 2013
+Tonya Sosa ... awesome! That's inspiring
Tonya Sosa Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
MS Views and News here on TH-cam has some awesome and informative videos that gave me a lot of info to keep me up to date with the challenges of living with MS. I officially got diagnosed in 2012 after having symptoms for 20 years. Doctors kept telling me I had Chronic Fatigue, even after not being able to use my right arm for 2 of those years. I was on Copaxone for 1and 1/2 years til I had a reaction so I went off it. Roughly another year went by til last November and boom got hit with major relapse symptoms. Now I'm in the process of starting a new med. i found a great MS center in Kansas City, Mo at St Lukes Hospital. I hope all the best for you. This disease affects all of us differently.
+nordonna Hey, thanks for the info and tips. It sure does get us differently, what a wild ride! Good to hear from you
Your video is fantastic. Thanks mate.
+Roderick McDonald ... thanks mate! Check out my recent update, too
I just really responded to your video. We are similar age I guess and you have been dealt a hard hand, but just, straight up you made this and reached out to people. I really respect and admire you. Clearly you are getting on with life and you have a lot of stories to tell besides the illness. I'll be watching the update with interest Spencer.
+Roderick McDonald ... you're so nice! Thanks for the vote of support!
Spencer, it seems to have taken you a long time to be diagnosed. but on the positive side, you have been 'vital' for some time. Do you think this is because you are a vegetarian, and your body is well suited to deal with it ? ( seems you were doing 'Swank diet' Before the illness anyways )
+Roderick McDonald ... one never knows for sure if it's because of what we do or just a coincidence. But I do tend to think my long term diet and activity have helped. With that said my more recent nine changes seem yo have helped even more. Your story?
Thanks! Was just diagnosed w/ MS. Video helps.
Take it slow. You’ll be okay!!
it's interesting to hear peoples symthoms. Thanks for sharing
Lots of variation between people for sure
Lori Favela Hey! I just started a channel here on TH-cam & I am also a person living with MS! I would love it if you would come over and check my channel & subscribe! ❤️
You look so young and you are very articulate. Stay strong
Thanks! I'm doing quite well 5 years later
@@metaspencer I'm happy to know it!
Listen man. I have MS , i am 29 years old. U have to get on those meds bro. I met one lady that had the same issue as u with getting on the meds and now she cant even look up, she can hardly walk, can hardly talk and can hardly see. As much as i hate medication i know i have to take them. And lucky me marijuana was legalized here in Florida on election day and that is proven to be 1 of the better treatment for MS symptoms
I'm glad you've found a path through this disease that works for you, but I'm simply taken a different route. Having read a lot of the research on the various MS meds, I still haven't seen any with guarantees. There is risk of permanent nerve damage either way.
metaspencer check out the one i take called "gilenya" its the one that is found to reverse the disease. I havent had a flare up in 3 years now. But if you chose the no medication path i wish u luck but trust me. Everyone i know that has chosen that path gets hit with disabling symptoms when they do decide to come back. I wish you luck buddy. Do whats best for your body not your ego
That's a pretty intense drug you're on, given what it does with your white cells. As someone with a low WC already, I can't take it. Everyone I know who's on a MS drug has ended up with side effects, problems, and ultimately switching between multiple meds. So I'm wishing you luck, as well.
metaspencer I have been on the drug for about 2-3 years and i have never had a side effect. The only time i must say i had a bad side effect was when i was flaring up for the first time and i had to get the "solu medrol" infusion for 3 days, 1 hour a day. That had some weird side effects but its a 1 time treatment. I also take vitamin d5000 once every morning. And my MS is very painful i mean as far as joint pain, muscle pain, and things like that. I have to take a lot of pain medication thats my main issue. Hopefully since marijuana became legal i can get off those and move forward. Where r u from?
Like a said, I'm glad you've found a path for yourself. Sounds like you have things figured out well
It’s crazy to see how much things change the longer you have MS. Your really so lucky to not have to take the meds. I couldn’t see so bad nor walk when I had my first big exacerbation! As soon as I started on the steroids. Then with the disease modifying drugs helped me regain my vision. Your perspective is awesome too! Take care!
Glad to hear you're doing better, at least with the vision. I'm not sure if I'm lucky to not be on the meds or if most or all people could follow the same route I've taken (anti-inflammatory diet, D, rest, etc.). But having had the disease over 20 years now I know what you mean about the accumulation of challenges over time. Great hearing from ya!
I was congratulated to not need a spinal tap... Apparently, the MRI was totally conclusive.
I reckon the neurologist will 'splain more...
Good job getting some answers. It's all a lot to take in, so take it slow and hang in there!
I had the same experience with the spinal taps as Spencer. I finally told them that is enough. No more. Lucky you. My MRI turned out to be conclusive too.
Thank you for your story I was diagnosed with M S a few months ago. I am older than you and have had symptoms for years.
I’m 53 now and doing great! Have you looked into the diets?
Thank you for sharing your story with the world. I know you will help many people who are affected also. Very impressed that you went vegan, and have chosen a very healthy way of life. I’m sure this has made a positive difference. I’ve read and heard about CBD oil being very effective for many like Parkinson’s and/or seizures, etc., so I would give it a try since it is natural. Blessings 💙
Thanks for the support and nice words! All best!
I’m almost 6 years into this nightmare. One doctor diagnosed me and sent me to an MS clinic who won’t help me until I have neck and back surgery. It’s a complete nightmare to go through.
sounds tough! I'm guessing you've upped your vitamin D levels and gone on a strict MS anti-inflammatory diet ... hang in!
It's sad the diagnosis takes so long to obtain. It's my son who has MS. He was 31 years old. Yet he was exhibiting the worst symptoms of the disease a good 5 years prior. Going back further I can see many of the symptoms when he was just 9. As a parent you find excuses for all the symptoms. But when you see your child in a hospital bed his body shutting g down it scares the manure out of you. It was that hospitalization that triggered the tests needed for a diagnosis.
You would think that would make it easier. NO it is the start of an even bigger nightmare. Many can't hold a job when the symptoms progress. Without a job and being over 25, you are screwed by the system that was set up to help in exactly these situations. You have to fight the government for Medicaid. Then if you are lucky enough to have weathered that war (not a battle alone) you have the next major war with all its battles to contend with. Getting treatment would sound easy, but with just Medicaid it's a horror story. Not one neurologist in this country will see you without insurance. Then you find out they dont take Medicaid. This starts a two year waiting period before you can get Medicare. The government thinks since there are remissions and most people are not affected so they dont need to be in the category of an I curable disease. It will just go away so you get to wait for two years for Medicare. That is unless you have an unrelenting bitch of a mother that fights the battles. It still took 6 months for my son to see a neurologist and get treatment. In the mean time he had a major relapse. This time instead of 43 active lesions on his brain and spinal cord, it was uncountable covering everything. He also now had a golf ball size blackhole where brain tissue should be. Medicare doesn't care, it's a governmental bureaucracy that only believes in the politically correct diseases. More people's stories need to be known.
If it wasn't so fatiguing I'd say do a March in Washington.
Hey Agnes -- Your challenges are very real. My own Mom felt bad for not knowing it was MS for me sooner, but I don't blame her at all. She was just being optimistic whenever I had symptoms and didn't want to think it could be something serious. With all that said, I'm hoping your son has a chance to do some reading and studying up on this disease, as there are many of us our here doing very well with it. Vitamin D, diet, rest, stress reduction ... there is a lot he can do! Hang in there.
@@TheGrandmaTeabag there are definitely some challenging and hard stories out there, but also some inspiring ones. I'm hopeful that things will be positive for you boy! :)
What's JC load? I'm 66 never been on drugs, had symptoms since I was 24. I live alone, no help at all, can walk a few steps, very coordinated, get out of breath after a few steps, sometimes can't swallow. I'm lucky. Until about five years ago I barely knew I had it. Wishing everyone the best.
The JC load stands for "John Cunningham's virus" which is a virus that almost everyone has. It's harmless unless you limit the powers of your immune system, at which point it can attack your brain and kill you. So people taking a few MS drugs, like Tysabri for instance, have to have their JC load tested on a regular basis to make sure they are not going to be killed by the virus. I have a high JC load just naturally, so can't take Tysabri. In fact, I'm happy now to be drug free as I've found that my approach works very well for me. It's great to hear from you and thanks for checking out the video! Be well!!!
I'm doing infusions now they stopped me from Aubagio I'm jacob thanks for the video man 🙄🤔😱👻.
Good luck to you, man. Stay strong!!!
Thank you for this video. Best of health to you.
Thanks!
"I'm not really into brain infections" 😂
It is not an infection. Educate thyself!
You are so brave and I wish you the best outcome possible!
Thanks!!
I have a lot of similar symptoms as you do in my legs. Such as getting really cold to the touch, numb, and tinglely.. I also have some aching pains throughout my legs. I'm only 17 and just recently went to a neurologist who didn't run any tests just jumped to the conclusion of being stressed out.. I've had these symptoms for months now, and have been doing a lot of research on ms. The first doctor I went to thought it was a possibility and I just want to know if you or anyone could give me some advice on what I should do next.
The same symptoms (numbness, for example) can come from different causes, and the same cause (MS, for example) can result in very different symptoms. So a symptom-based diagnosis can be hard to come to. MS is always diagnosed with two or three of the following: symptoms of MS over time, positive MRI scans (brain and/or spine), and positive signs in the spinal fluid. Maybe just seek a second opinion from another doc
I would suggest getting another doctor's opinion. I went through 5 neurologists until i found the right one!
Good advice.... I’ve also seen 5 and still don’t have a good one I fully respect
@@metaspencer i contacted the MS foundation and they gave me a list of MS neurologists based on where i live. Hang in there until you find the right dr for you!