Multiple Sclerosis - How I Knew I Had MS
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- เผยแพร่เมื่อ 19 มี.ค. 2022
- When did you “know’ you had MS or other chronic illness? Did it take some time to get diagnosed? Did your intuition, your gut, tell you something was wrong? In this video I share a bit about my MS symptoms and diagnosis story.
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Thank you for your video. I had a nerve conduction test done about 12 years ago. I was told i had nerve damage, but it was not MS yet. I often complained to my neurologist about other symptoms and basically just given another pill or shots to take. Passed from Dr. to Dr. I finally after 12 yrs. figured out for myself what was causing the nerve damage and other symptoms. Gluten. I was an undiagnosed Celiac for all my life. That was causing the headaches, dizziness, loss of function in my legs, etc. Celiac can cause you to not absorb the nutrients your body needs, causing a host of problems. Osteoporosis by age 40 (bones of a 78 yr. old) and 3 spine fractures starting at age 32. Just treated with chemicals for that, not trying to find the cause. I've been gluten free now for about 2 years and am so much improved. No longer bed ridden for 4 or 5 days from pain in head and face. When I have anything with the tiniest bit of gluten, even cross contamination, I can feel all symptoms coming back. Don't know if this will help anyone, but it's worth a try. I am in charge of my own health now. God bless.
Thanks so much for watching and commenting! Being our own advocate is so important. I am sorry it took so long for you to get answers but am glad you are improving!
Yes yes 👍……. Absolutely gluten… your post sounds as I had written it myself. I have proved it’s gluten , but my dr thinks I am making it up, and it’s a fad thing….. absolutely not…. If I have things with gluten it my joints are painful, knees , elbows, ankles . My ankles will give way on the stairs, I can’t walk properly , my elbows are tender when resting them even on an armchair. My wrists give way when holding things like kettle or even a cup of tea….. it started about 20 years ago. Over the years you get to learn what affects you , but taking out of your diet , and putting back in to test……. I always say DONT LET ANYBODY TELL YOU HOW YOU FEEL. They are not the ones suffering with all that it brings. ….
Thankyou for this...did you ever have the blood test for it ,? just curious
Great comment, Gluten is causing so many issues and yet people cannot connect the dots, it just doesn't make 'logical' sense, until you make the change. I can only say that my life has improved no end.
Please anyone suffering from an Auto immune disease (MS Included), google the connection to Gluten, see for yourself!
😊
I just got diagnosed. My symptoms were vertigo, depression, tingling in my feet and hands, pain in my legs. I also could not write anymore. My hand won't just listen to me. I have such strange symptoms that in the past I've been diagnosed as mentally ill. Finally i have the right diagnosis. Now i know I'm not crazy.
Hi Alex! Congratulations on your diagnosis! What an odd thing to say huh? But when we can’t find answers and we (or others) think we are crazy, it can be such a relief to have answers. How are you doing now?
My mom has tingling (a couple weeks) and vertigo *many years. She is supposed to go for an MRI.
@@ptulip thanks for watching. I hope your mom gets good results.
Hi, I just got my diagnosis with Vertigo as well. You can add MS and Depression to the list, although depression was never diagnosed. I also had problems with my right hand, not being able to really write or comb my hair too good. But I did notice that after eating a good meal that it improved greatly. Do I believe diet is very important, and simply just eating enough!
@@veronicaalbrecht725 you are so right eating healthy is so important!
I was diagnosed in 2018 at 30 with complete left side numbness and disfunction when i stood up(leg and arm), debilitating migraines, and leg pains. Delt with this for 10 years. Finally, I found a doctor who would listen, and i was sent in for an mri. I found out my frontal lobe was riddled with lesions. I also found out I had scoliosis. I already knew about MS because I had an aunt who passed from complications. So, of course, i was terrified... i immediately tried dmd. I tried 2 different ms medications within the first year and a half, and I lost my eyesight due to optic neuritis. at this point, I was done. I chose to apply what I have read about MS to my life ( because again, my aunt had it, and i read so much about healing her. Just didn't know i would be healing myself). I stopped the MS meds and focused on a heavy metals detox, changed my diet (alkaline/ whole food plant based as well), and i consumed lots of herbs and supplements. Tips: Have your vitamin d levels checked. My levels were 7 ng/ml when checked, so I now take higher than normal doses along with vitamin k2. Mushrooms are also beneficial. I drink chaga tea daily( balances the immune system) , Willow bracket, and lions mane( google the studies done on these 2 for Ms) . Focus on an anti-inflammatory diet. Meditation is so good. 😌 look into the book, the medical medium, and he has interesting things to say about what MS actually is. He suggests lots of supplements, and I consume lots of what he suggested... look into things that calm the nervous system. I take lemon balm and passion flower tinctures, and they are amazing! Sorry if I'm all over the place. Im just passionate about my healing journey. I still do yearly MRI scans with my neurologist, and i have not had any progression in years he calls me his miracle patient because my ms was very aggressive in the beginning. I still have some eyesight loss in my left eye but regained perfect vision in my right. I have some fatigue when i overdue things, but that's it....I encourage those who are reading this, to not be afraid, take your life back, and heal! You got this! ✨️ 😌 🙏 ❤️
Thanks so much for watching and your lovely note. Like you, I have been on this healing journey and am passionate about it too! I work with my neurologist and naturopathic doctor and get my bloodwork done regularly to check my vitamin D levels. I 100% agree that anti-inflammatory diet and mindfulness. I also exercise regularly and make sure to get the best sleep I can. Congratulations on the 'miracle' designation from your doctor! Excellent work!
@Even So It Is Well Thank you for sharing your helpful information! Diagnosis can be tough, and I know people need to see others doing so well. May you continue on your healing journey! 🙏
This is terrible advice & a denial of reality. U cannot heal urself from MS or any other neuromuscular disease or syndrome. To claim otherwise is to tell others less fortunate that they r failing to cure themselves. U r extremely lucky, b thankful & find empathy for those who survive with extreme symptoms.
@@friedricengravy6646 I never claim we can cure our MS but we can definitely experience some healing after relapses.
@@friedricengravy6646 There is a lot of new research on gut health (microbiome health) as possible root cause of autoimmune diseases, so it's very reasonable that people with autoimmune disease are looking into anti-inflammatory diets. I think it's a positive step forward and helps people feel less helpless and more proactive with their own health. Very little is known about autoimmune disease so it's promising research. It doesn't take from having empathy and validation for those suffering with severe symptoms. It gives hope. There are also researchers who link psychological trauma to MS (Gabor Mate), so it's good to keep an open mind as new information comes out.
I've been going to the doctors for 20 years with complaints. Always treated like I'm a liar and sent away. The last 3 months I've been home with severe pain, daily all day migraines, severe cognitive decline and lethargy. Went to the doctor and told I have a sinus infection and sent away. Why won't doctors help me but help others?
Oh I am sorry that is happening. Keep advocating for yourself. I hope you can find some answers.
I ask the same questions. I had an actual heart attack post op and it was blown off and ignored. They never even told me that was why my chest hurt. I found out later looking at the blood work to figure out why I cant seem to hold on to Electrolytes. DOs are better than Drs.
I have had MS since my 30's I was treated with steroids and it would come and go. They would tell me that it was all in head. I finally found a good neurologist. Who was wonderful. I went into remission and now I am 73. And it has come back. We moved from AZ 14 yrs ago. My new doctor here in FL. would not believe that I had it, until she saw my MRI. She was awful. I now have a good doctor. But there is nothing worse than a doctor that won't believe you. Thank you for this video. And I will include you in my prayers.
Thanks for sharing your story. I am so glad you found a good doctor!
Can't you see ms on mri scan
Thanks for watching. Using MRI scans in one part of diagnosing MS but people can show spots and lesions for other reasons as well such as migraines.
@@EvenSoItIsWell thanks
I saw one of those Dismissive doctors yesterday. With a little smirk like smile, and a wave of her hand,
she said oh no, you don’t have MS, we’re not going in that direction.
And hopefully I do not have it, But she was not listening to or caring about my symptoms.
I couldn’t wait to get out of her office.
Oh, I am sorry that happened. I hope you find a doctor that listens.
You probably DO have MS. Too many QUACK doctors, and MS is extremely common.
When my symptoms started I was telling my GP what was going on. Since I am diabetic the dizzy spells we're attributed to that. Fortunately I went to an ENT that truly listen to me an ordered an MRI. That's when the truth reared it's ugly head. It is unfortunate that MS Mimics a host of conditions and is not so easy to spot.
I was diagnosed at 39. I am now 54, I have RRMS. Looking back I had symptoms as a very small child. I started having strange attacks during my teens and after my babies were born. I started different Meds they made me worse. I have found the best thing is resting when your body is telling you l believe changing habits and routines, learn to say No to others demands. Light weight gym workout also helps. I decided I have had this all my life I only take pain relief when needed. Being diagnosed was the best thing that happened. I finally knew I wasn't lazy.😢❤
Thanks for watching! It really can be a relief when we are diagnosed! We feel validated and know our symptoms are real.
I really feel for you and I do understand. My wife was diagnosed as having a stroke because the symptoms were predominantly on her right side. Then she was diagnosed with MS. Finally the neurologist got it right. She had it for 26 years. I was her carer for almost all that time. We even built a disabled home where I live now. Take care. Enjoy life as much as you can.
Thanks for watching. So wonderful that you were able to care for your wife. I am sorry about the initial misdiagnosis. Autoimmune diseases are so difficult to pin down and diagnose.
I knew I was sick, some autoimmune illness since my 20’s and then finally was diagnosed at 52 last year. For 27 years I had been going to doctors because I was an archaeologist; work that demanded 10 hour stints a day, walking 14-16 miles off trail a day. During my 2nd to last year of arch. in 94’, I all of a sudden became exhausted, started falling down the mountain. Two years later, I was in a ball of pain for 2-3 days until the flares broke. Then was accused of pill shopping or psychiatric disorders for decades to come. At age 33 I could no longer work. I diagnosed myself with Reiter’s Syndrome(can’t see, can’t pee, can’t climb a tree). Rheumatologist agreed. Maybe I have both. Still working that out. Unfortunately they cut me for tarsal tunnel syndrome. Biggest regret. Then last year, my wife got me into a Dr. who looked behind every corner. Inflammation so high that it was MS or Brain Cancer.
I would be careful when researching your conditions as simply putting in the search terms can you contaminate the results. The landscape of the internet is so polluted. It used to be full of very helpful information then goofballs started inundating the web with nonsense, anecdotal and quick cures. You have to fight for yourself. Nobody cares but you when it comes to you and a doctor. You often find you’re the least important person in the room and it’s some kind of ego trip you are paying for…..over and over. I’m bitter. I’ve lost my life as I knew it and only because someone loved me did I make it this far. Optic nerve damage, mass lesions in stem and other parts of the brain. Still great balance but lots of other problems. Ms is as unique as the nervous system it is attacking. Last neurologist said MS isn’t painful yet trigeminal nerve pain a.k.a ‘suicide disease’ is nearly impossible to control and can last for years. You feel parts of your body, that most of us are aware of.
I am so sorry you went through all of that. I hope you have found some treatment/relief.
@@EvenSoItIsWell…. On Tysabri for 8 months, then a 3 month unexpected break due to incompetence. Had my first since Christmas. Still have terrible flares.Doctors blowing me off as depressed…his words..”well, 50% of MS patients are depressed”,
I disagreed as it pertained to me. I’ve been fighting to stay alive. It has been a nightmare. Now an optic nerve lesion. That spooked me. Thanks for reaching out. This is hard and getting harder. Lots of assumptions I’m finding, like cures through diets, to it’s not as bad as they make it out to be, to you look fine, pulling the wool over folks head. It’s an intimate disease that really messes with you as a person.
Hello! Thank you for this video. I’m 21, almost 22. I just started having MS symptoms in the last few months. I went to the ER yesterday and I passed my physical, my reflexes are still intact. The doctor said I don’t currently meet the requirements for an MS diagnosis, but he said that he doesn’t promise that I’m not developing it. I’m extremely dizzy and lightheaded, shooting pain and numbness in my extremities, etc. I don’t know what to do moving forward…. I’m a healthy person, grew up playing sports and I’m a yoga teacher… and so young! So it’s a bit shocking. Regardless, your warmth and honesty in your videos drew me to you and I really appreciate your videos.
Hi Kayla! Thanks for watching. It can be so challenging when we have symptoms and no diagnosis. Keep track of your symptoms and keep taking exquisite care of yourself. The better health we are in the more manageable our symptoms are. And keep advocating for yourself. Autoimmune diseases and disorders can be very challenging to diagnose. Keep asking for referrals or seeking second opinions is your symptoms are troubling you.
Anxiety?
This can be anxiety. I’m surprised a doctor let you walk out of the office with his arms up in the air. Dizziness and lightheadedness can be anxiety and a million other things. I would find a new doctor
Wow. Did I ever need this video. I'm 67 years young. 10 years ago I began to have what I thought we're symptoms of fibromyalgia. I was in a stressful relationship and my diet was not very good. I changed both the status of the relationship and the diet, the symptoms greatly reduced.
Then I got COVID. Not once, not twice, but 7 times over three years. During that time I was diagnosed with long covid. I was in a wheelchair when I went out and my mobility in my house was aided by a walking stick or walking frame depending on the severity of my symptoms.
I would go through periods of time like two or three weeks or maybe even a month where I thought oh I'm getting better and I would literally dance around my house not use a walking device feel really terrific have a lot of energy have my cognitive stuff back.... But eventually I would have a a relapse of symptoms... The entire time I'm going through this I have a friend with MS. And to be honest I didn't know very much about MS. But it began to be obvious that we had many similar things happening in our lives.
Then about two weeks ago, I became so ill I could not get out of bed I could not walk I could barely feed myself I was an excruciating pain I had been diagnosed with long covid and so had been given gabapentin that I could use at will and I also used ibuprofen but it was getting to the point where none of these things were working. I got in touch with a friend of mine in the United States who is a medical assistant and she sent me a form of symptoms and she said would you please just check over these and tell me which of these symptoms apply to you. She purposefully didn't tell me what it was for.
I had about 80% of the symptoms on the sheet (including the famous MS hug symptom).
She told me that it was an MS symptom sheet and I needed to make an appointment with my GP and try to get in to see a neurologist.
That's the moment. That is the moment I said to myself 'oh my god I have MS'. Not only do I have MS but I have had Ms probably for the last 10 to 15 years.
I burst into tears in a combination of shock and relief and a not a small bit of fear.
I am in full relapse mode can I have been on this internet looking for information because like you I believe information is power
When I ran across your video it resonated with me so completely and I felt so encouraged by it.
About 3 months ago I switched to a plant-based diet.
My mobility is such it is difficult for me to exercise but I am going to pursue something for my strength.
Thank you for this video. So so so encouraging. Blessings. ❤️❤️❤️
Thank you so much for watching and you nice note! Good on you for not only looking for information, but for making changes to your diet and lifestyle. I hope you continue to improve! Keep me posted!
Keep fighting. Hugs.
Thank you for sharing your story. It is eerily similar to what’s been going in with me. I was diagnosed with fibromyalgia 10+ years ago. This winter has been terrible health wise and I now have new symptoms and inflammation (fibromyalgia doesn’t cause inflammation) that leads me to think I have MS.
@nrg3488 thanks for watching. Keep advocating for yourself. I hope you get answers soon!
I told my doctor, when I was in my early twenties (now 64yrs), that I had MS…don’t know how I came to that conclusion, it was back in the 1980s, no internet back then. I had very few episodes. Fast forward to age 32, I went blind in one eye, started having dizzy spells….time to go to a neurologist and voila, I had predicted my illness. Still to this day, I don’t know how I knew
Thanks for watching. Isn’t amazing how our intuition often has the answer if we listen hard enough. So glad you have received your diagnosis and can now be treated and living in a way to supplement your health and minimize symptoms.
Thank you so much for your video. I'm preparing to see a neurologist for hopeful diagnosis on Tuesday. What you said just before the 10 minute mark really struck a chord with me. One of the reasons getting a diagnosis and a name for what's wrong is so important is that I want confirmation that my symptoms are real, the pain and confusion and numbness is not all in my head or manifested stress, and I honestly want the support from my family to make changes beyond just what I can do. I need the understanding and belief of others. Your confidence and warmth and ability to still remember and articulate things gives me hope. Lately I have felt like my future is unraveling. Thank you again ❤
Thanks for watching Cara. Please be gentle with yourself and keep advocating for yourself. It can be very difficult to reach a diagnosis. Keep asking for referrals and second opinions. Good luck and keep me posted!
Same here!
@@anjiyaroyal1984 thanks for watching. Hang in there and keep advocating for yourself!
Same for me..... it's been such a long lonely road....
Thanks for sharing your story.
You’re welcome! Thanks for watching!
That sounds so very familiar. Going through that now for a while I’ve got a lesion on my spinal cord that hasn’t changed in Almost 10 years and I had some in my brain as well, They haven’t changed since they were discovered about four years ago but I need one more thing for them to cover for treatment and nothing has come up that is concrete yet. I did have the fusion surgery because I needed it. My neck is in bad shape due to too many times, falling off horses and out of trees and just getting up and going and not even thinking a thing about it , when we were kids. I was actually frustrated that my first spine doctor kept putting me off and not seeing any issue on my imaging and I went for a second opinion and the guy pointed it out to me right away. but he sent me to a pain specialist for more tests to see if nerve blocks and steroid injections would help. At least they would be diagnostic. And they were.
At one point, I had dry needling done to relieve pain in my neck and shoulders, and that was a pretty weird sensation when she hit those trigger points. It definitely relieved a lot of my pain which was coming from muscles knotting up, because they were overcompensating for the muscles that were not getting the signal. However, it also made it impossible for me to use my arms for any length of time. I couldn’t even brush my teeth for more than 10 seconds without resting. And it took me to getting to that point to realize I needed something done my body just compensated automatically over all those years as things degenerated.
But I still have other subtle symptoms that may be pseudo flares, but no neurologist really wants to say it’s MS. Going to see a different specialist because of my constant headaches and roaring pulsatile tinnitus. Hoping they will be able to do something.
Thanks for watching. Sound like we are a lot alike! I too, fell of horses, out of trees, and took a few headers on ice skates. Keep advocating for yourself and keep track of any symptoms. Even subtle changes could indicate something is amiss.
Nice lady.
Wishing you the best 💕
Thank you for sharing your story.
You are welcome! Thanks for watching!
My first symptom was with my eyes. I was sent to three doctors in 3 hours. The last one, an optic neurologist told me it was a virus and injected steroid behind the eye that was now half blind (bottom half). It halted the episode. Two years later I had a severe bout of dizziness. A year later I lost my balance so bad at work I was sent to hospital and finally diagnosed. That was 25 years ago, and I am still here, have had cognitive issues, fatigue and weakness. Rest and Less Stress is key.
Hi Sandy! Thanks for watching! You are so right, rest and less stress are key!
Your story is so similar to mine! NO ONE believed me, especially the doctor that I didn’t click with. The orthopedic person I visited, who insisted on cervical blocks even when I wasn’t in any pain, was actually a blessing in disguise because the anesthesiologist who administered the block asked about why no one had completed a full head scan on me. I went on my own to an autoimmune specialist who ran did lab markers; when he didn’t see anything but knew my weakness was evident, he sent me to a neurologist. Even the neurologist didn’t think I had MS but ordered an MRI with and without contrast to rule out other factors before he investigated my weakness. I had not made it home from the MRI when I received a call with the MA diagnosis.
Oh, I am so sorry no believed you. I glad you finally received answers though!
I had CDIFF and I went to one dr and they told me that I need to eat healthy. Lol! I was being gas lit of course. Went to another clinic and got testing done turned out it was CDIFF lmao! So funny how dr do this to us. Or I'll google my symptoms and convince myself i have something when it's not that and the dr will diagnose me with it lmao. I had an imaginary STD one time and I remember jogging 5 miles everyday and putting whole oranges in my smoothies I was the fastest runner out there and the most healthiest. Went back to the dr (saw a different one) turns out it wasn't an STD and I was fine. Omg so funny though how we can gas light ourselves to.
thank you for sharing your story, as well as how you care for yourself now. i'm really glad i found you on here :) hope to keep learning from you! (edit - i also have MS, diagnosed april 2022)
Welcome Alex! Thanks for watching! I am glad you are here.
Great video! Vickie, you are so positive and loving in sharing your story and how you’ve learned to live your best life with MS. Thank you so much ❤
Thanks so much for watching and commenting! ♥
I relate so much to your journey. I haven't been diagnosed yet but hearing you talk about your experiences feels so familiar it makes me feel less alone in this process. Because damn, just getting to the diagnosis is exhausting.
Right?! Hang in there. Autoimmune diseases are tricky to diagnose and you want to ensure you are getting the right diagnosis and treatments.
And EXPENSIVE!!
Yes! It can be for sure!
Get a spinal tap to confirm!
@@imbimeere thanks for watching. I am so sorry you have been through all of that. Please try to take exquisite care of yourself and your health as you are able.
Thank you for sharing your story!
Thanks for watching!
Thanks for sharing Vicki. I appreciate your opinion and knowledge. I too feel I may be at the beginning of MS. I’m sixty-six and a retired school teacher from Los Angeles. During the pandemic I had a bad case of sciatica. I had never had it so, I checked it out and yes, so I worked on my exercises to relieve the pain. However during the pandemic since 😢we were all being very careful, I couldn’t go back to the normal routine that I was used to. Last year, as we were getting more comfortable with venturing out, I was better able to notice that my legs seemed really weird. It was a different feeling that I have never experienced. I would feel very unsteady and unsure of navigating around when shopping. I did fall a few times but I must have very strong bones since I never injured myself. I was very active before, like dancing, skating, riding my bike…I became more concerned about if this was really tied to my sciatic problem. I always get my yearly physicals, more so now that I am aging. Since I lost both my parents while they were in their seventies, my sisters and I feel we need to be proactive. My parents lead good clean lives yet, my mom got Parkinson’s and my dad had type 2 diabetes. Like you mentioned I too am a good judge of character when it comes to doctors. I get that gut feeling when they try to placate me with all the medical jargon some use. So presently my balance and walking are still my main concern. My last physical my doctor told me a lot of it was in my knees, since I have arthritis. Yet, I still hear that little voice telling me it’s MS? Thank you so much again for having your channel. It does make me feel as if I am in very good company. Be well and stay safe. I’m Alexander from Los Angeles. 💙
Thanks for watching Alexander. Sorry you are experiencing this. It is hard for us to really convey to our doctors when we know something is just not right. Yes, you have knee problems, but you feel unsteady… keep advocating for yourself and asking “who should I see next?” And “Can you recommend someone else?”
Keep me posted.
Autopsies show MS victims all have or had tapeworms .Fenbendazole has helped many people.
Thank you! I was diagnosed 3 weeks ago and I'm very scared. Hearing your story helps me a lot!
I am glad it helped!
Hi Maris! I am very excited to announce I am launching a course on living well with MS that might be great for you! I would love to get on a call with you to see if it would be a good fit for you. You can book a time here calendly.com/vickie-hadge/living-well-with-ms-using-the-d-e-s-k-method
Whats ure symptoms
@@stevengrant9837 my symptoms include sensation loss and numbness on the left. Primarily in my hand and foot, spasms, weakness on the left, fatigue and cog fog. All are manageable and I am able to live well with them.
Autopsies show all MS victims had tapeworms. Fenbendazole has helped many people.
Great info...you are inspiring. Stay healthy...you are doing this!!!
Thanks so much!
Thank you so much vicky. This is very encouraging. Hope u best of luck!
Thanks for watching! Wishing you well too! ♥️
Great video and content.
Wishing you continued health.
Thanks for watching Ann Jean!
Thank you for sharing I was just diagnosed with ms and your information is giving me hope 🙏🏼
Thanks for watching. Being newly diagnosed is scary. Hang in there and be gentle with yourself. The first year or so is a time of adjustment. It does get better though!
I love your attitude and personality. I think your outlook on life makes a huge difference towards how you feel. Wishing you the best!
Thanks so much for watching and the lovely compliments. Our outlook does help a lot! It is something I work on daily. 😉
It took me 16 years to have the ms diagnosis. I too ignored many signs over the years. Looking back I see so many things I experienced that pointed to ms.
It is amazing what we can rationalize away isn’t it?
Yes, information is power!
Absolutely!! The more we know the better off we are! Thanks for watching.
Beautiful video ❤ Thank u for sharing Vicky❤️🥰❤️
Thanks for watching Rose!
My mother had MS. She passed in 2018 At age 60 from complications (became a quadriplegic). She regularly said the treatments nowadays are sooo much better than her options were when she was diagnosed in the late 70s.
I am sorry you lost your mom. Yes, she was right there are over 20 disease modifying treatments available now.
My mother diagnosed 12 years ago and is the same no treatment given only one so for my.mother no diffarance I have fybromyalgia
Sorry for your loss.
I felt the same way as you! After 7 years of surgeries and meds (& I've been on crutches 10 1/2 years),! I was diagnosed with MS 11 mths ago. And even though it was scary, I was so relieved to finally have an answer! Because now I can know the Things to do to help myself! Diet, exercise, meditation,all the things you said!
Thanks for watching! I really is amazing how much relief there can be with just knowing, right? Once we ca. name it, we can stake steps to treat and learn to live well with it! Let me know how you do with the healthy changes you are making!
Thanks for sharing your story. You tell it well.
Thanks for watching!
Echoing what others have said but thank you for your video! Such a beautifully hopeful and gracious tone in how you share your journey - really encouraged me today. Bless you!
Thanks for watching! I glad it helped you today.
Thank you so much for sharing your story
Thanks for watching!
@@EvenSoItIsWell ❤️
Great information, Thank you. I also have scoliosis and wore a brace when I was a teenager, the worst possible time to experience that! But I normalized it with my friends and kept my confidence and sense of humor. My brace had a name and was considered just part of who I was. After watching this video It opened my eyes. I now know that I have been having symptoms for years! I just never thought it would culminate into MS! I see the MS specialist this week. To be honest, I am scared. I do believe that diet, exercise, and meditation will help me get through this. I have done it before, I just got off my path for a bit, but will find my way back. I will continue to watch your video for support. Thank you for doing this!
Aww, thanks so much for leaving a comment. You made my day! It is interesting how many people with MS also have scoliosis! I am currently looking into my old health records for clues as to when this all started.
Good luck with your appointment this week! Let me know how it goes!
The unknown is the worst. When my older sister was alive, when she was finally Dx with MS, it took a long time... The drs would tell her, her symptoms were in her head, etc. It was ridiculous the run around she got...
I am sorry your sister experienced that. Yes, the unknown is challenging indeed.
Thanks for your grounded, informative report on your MS experience. I am sure you will give hope to others in your situation. Keep up the great work.
I would like to say I love your green (my favourite colour) glasses. Would they be available to purchase online, as I am in Australia. Nola
Thanks so much Nola! My glasses are from a company called Pair Eyewear. I love that I can change the tops to match my outfit and mood! Here is a coupon code rwrd.io/5mbgety?c
I am not sure if they ship to Australia, but if they don’t, I would be willing to help facilitate that if you’d like!
I was diagnosed with MS yesterday , I’m 67. I was 29yrs old, when I had nerve conduction tests & a lumber puncture. The neurologist said probable MS come back when you get new symptoms or symptoms worsen. I tried to do that , but there was always a 3mth wait for the appointment so by the time it came around I was back to normal so I canceled
One time I was at a urologist, my leg went to sleep and when he called for me I fell. The urologist said I should be seeing a neurologist not him when he found out about the other symptoms & that I I’d had similar symptoms a few months earlier. He immediately rang the neurologist & 15 min later I’m seeing the neurologist. He said the urologist told him I had the same symptoms in January, why didn’t you see me then? I explained , I rang for an appointment in January but appt was in March, just before that the symptoms went away so I cancelled.
At the same time I was reading about "yuppy flu", chronic fatigue syndrome. My symptoms seem to fit this condition so I went to see a specialist in CFS. She diagnosed me with CFS/ME.
For 15 yrs I knew I had CFS/ME, but I also had a lot of MS symptoms that didn’t fit CFS/ME (I was a registered nurse). At that time I saw a physician who had a special interest in ME/CFS. He told me to return to a neurologist as soon as possible as possible because he believed I had both MS & ME/CFS, that one could be secondary to the other..
I went back to the neurologist who had I’d seen 15 yrs earlier & he did another set of nerve studies & sent me for an MRI. He said it was inconclusive.
Over the years since then I’ve had many flare ups, at first the symptoms would go away each time, but then I stopped going back to normal after every flare up. My legs have got weaker, I have lots of permanent numb parts of my body & the fatigue has taken a toll on my quality of life. I had to stop working, then going out and now my world has shrunk to my home.
Last week I had 2 falls, then I thought I had an UTI, then left sided weakness, tremors & parasthesia. My left foot, left arm (from scapula to hand) & thighs are numb. I can’t put my pants, socks or shoes on. I’m having a lot of trouble walking, my gait is off, I feel off balance like I’m going to stumble & fall plus I have to concentrate on how I place my feet as I keep tripping over my toes.
This has happened multiple times over the years. Apart from an 18mth period around 2004, I had these sort of symptoms twice a year they last about 6weeks.
I went to see my doctor a few days ago wearing a dress & thongs (flip flops), she remarked on my clothing seeing we are going into winter here. I told her about not being able to lift my legs or control my legs enough to wear pants or shoes & socks. That lead to me telling her about all my other symptoms at the moment.
Next thing I’m having a brain & spine MRI. First time I’ve ever had tests while I’m in a flare.
It’s 50 yrs exactly since my first symptoms & 38yrs since a neurologist said I had possible MS.
I would have been diagnosed far earlier if I hadn’t stopped seeing the neurologist or if I had actually told a doctor about ALL my symptoms. I didn’t want to sound like a hypochondriac so only mentioned the symptom that was bothering me most at the time. I only ever told a doctor all the symptoms I was experiencing at the time I saw them 3 times. Funny how all 3 of them thought I had MS.
I was my own worst enemy, I now wonder if I would have had a better quality of life if I’d been diagnosed and treated earlier.
Thanks for watching and sharing your story. It is hard when our symptoms relapse then remit. We’re never quite sure. I am glad you finally have an answer and now perhaps you can get treatment and therapies that can help.
Thanks so much for making this video. I am like you, in that I feel that knowledge is power. I haven't looked at the worst of MS just researched symptoms and how to help them. Also, looking into how things are linked in our bodies. I love to have an idea of why. I have had subtle symptoms sincs childhood and dx with Fibromyalgia 15 years ago. I think this has slowed my chance of MS dx as I always put things down to that and never got to see Neurologist. Recently, my GP saw me and mentioned MS, refererred me to urgent care who thought the same. Now waiting on my Neurology appt. I have had the voice in my head for years saying "Sandy, you have MS".
Thanks for watching. I could see where the fibro diagnosis would lead you to put symptoms down to that. Many of the symptoms overlap. Good luck with your neurology appointment. Keep me posted.
Really great, comprehensive health journey story. A great reminder to focus on using energy for positive changes where you can and practicing kindness.
Thank you! And thanks for watching.
You are such a kind and sincere lady. Thank you.❤
Thanks so much!
Sorry about your diagnosis. So glad you're sharing,and helping other's.
Thanks so much and thanks for watching.
I was Dx June 15th 2023. My Dx came FAST and HARD. in January 2023 I went blind in my right eye… and it was Whirlwind of specialist and appointments. I knew I had MS by March but didn’t get the official Dx until June when u heard it from the MS clinic.
Thanks for sharing your diagnosis story. How are you doing now?
@@EvenSoItIsWell it’s been a wild ride that’s for sure! Looking back I wonder how long I’ve had MS and didn’t know. I also have ADHD and the neurological symptoms of ADHD and MS almost mirror each other. So that I was questioning if I actually have ADHD… I definitely have ADHD LOL. They say that it’s not hereditary, but I feel like my mom had MS that went undiagnosed because she was also a drug addict and had bipolar disease. But I’m noticing a lot of the things that I do now, are things that my mom had done when she was alive. Ie; random sudden fatigue, walking on my heels because my feet hurt, slurring my words and stuttering, etc. She never got an MS diagnosis because a lot of her complaints were dismissed by the medical community and chalked up as your drug addict and you’re trying to get more drugs. Some days I feel fine other days I feel like a complete bag of garbage. I lost a feeling in my left arm for about a month after my diagnosis, and recently I lost the ability to walk properly with my right leg, fortunately for me all three of my physical flares went away (ON, left arm and right leg) but I’m not the same. I can’t sit in the sun like I used to. And I can’t work as hard as I used to. But I’m fortunate enough to have a wonderful man who wants to take care of me and I don’t actually need to work to survive.
I totally recognize this. I saw a psychiatrist recently in Colombia and they really understand the situation. I was diagnosed with Fibromyalgia and a few more of those osis and itis disorders. Hopefully I can receive the help I need in the nearest future. I feel exhausted al the time and having pains all over my body daily
Thanks for watching. I hope you get relief soon.
@J H thanks. You are correct that vitamin deficiencies are linked to development of some diseases. I get my levels checked regularly.
When I was told I had fibromyalgia I really thought it was a joke …. The pain confusion and complete exhaustion is no joke . I hope you are well
I also have MS- diagnosed 20 years ago. Thank you for your story. ❤❤
Thanks for watching!
Excellent video. Thank you for sharing your experience. The WFPB lifestyle and integrative medicine approach is very powerful. Wishing you continued success in your health journey. Liked and subscribed.👍🏽🛎
Thanks so much for watching! I hope you are doing well!
Thank you so much for such a positive and warming video.❤ I got diagnosed just a month ago and in my case it was super quick, first symptoms started just half a year ago, but I’m happy I didn’t have to wait many years to know what is happening with me.
Thanks for watching. I am glad you were able to get diagnosed quickly! How are you doing now?
@@EvenSoItIsWell I,m better, thank you! I had 2 courses of cortisone in high doses, the symptoms have disappeared, but now I am recovering from the side effects of such treatment. But in general I am trying to keep positive, family is supporting me as well, so, cannot complain. In August I will start treatment with Copaxone.
So glad you are doing better! I had a hard time with the steroids too but they helped!
I have been on Copaxone or the generic for 6 years. Let me know if you have any questions!
Thank you for sharing your beautiful story ❤ I love your positive energy & your amazing outlook on life 🙏🏻 God bless you 🎉 your an incredible human being 🥰 Joey Kathlean
Thanks so much Joey Kathlean. I appreciate you watching. I hope my story can help others.
Thanks Vickie. I'm 60 and like others, have explained away quite severe symptoms and episodes since childhood as they eventually passed. In the last 4 years I've had 3 very debilitating episodes that have taken around 5 - 6 months to mostly get back to a new normal, yet every professional I've seen has put me in the middle aged female with mental health issues basket. I've managed it all throughout my life with diet, exercise and lifestyle modifications which mostly works well. although I've always felt there was something going on, I didn't even consider MS until about 2 years ago and the penny dropped, and it all made sense. I manage quite well at present, but I'm watchful and fearful of the next major episode.
I'm in a country where there is a severe shortage of specialists of all ilks, so the medical profession aren't encouraging in the public health sphere. Unless your have health insurance or can self fund, you won't see someone until whatever condition is more apparent or advanced.
It's also very interesting to hear others stories in the comments section of your videos. It can be a lonely position to be in, but I see there are others who can relate.
Hi Lynnette, it is funny how we explain away our symptoms isn’t it? Sometimes I think I was just too busy to be sick! Keep advocating for yourself and keep taking exquisite care of yourself.
Wishing you wel.
“taken 5-6 months to mostly get back to a new normal” Wow. That rings so true to my experience last year after my first serious relapse which I didn’t even know was a relapse. Its been 6 months since that incident led me to a diagnosis, and I’m feeling closer to normal but its not the same as before. Its my “new normal”.
@justinegustafson9998 yes, “the new normal.” I now look at my MS as a condition I live with and live well with. Yes, I have symptoms. Yes, they can be annoying, but I still have an amazingly wonderful life.
9/11/23 Thanks for a fresh look at what may be MS. I have had 2 hip replacements and recently a very extensive cleanup of my 5&6 lumbar spine. Lots of junk ground up and laying on nerves and hurting. I think from a ton of falls. I could sleep 24 hours a day unmedicated. I am ready to give up because I cannot find anyone who can explain it. You have come very close to describing my weird journey. I am 77yo, a retired geriatric nurse and find it very hard to find care. AND yes I have met my share of pompous Docs but I will say none of them are geriatricians. You have inspired me to search on! Thanks
Thank you for sharing. Love your glasses! Listening to you is very motivational! 😊 Will be watching more of your videos. I don’t have MS, but I am trying to be kinder to my body and mind.
Thanks for watching! I am so glad you enjoy the videos.
Your are absolutely lovely lady! Thank you for this video. Your energy is radiating in such a beautiful positive way.
That is exactly what my inner voice says too. Currently seeing doctors, soon getting MRI and other tests. Hope my inner voice is wrong but unfortunately I doubt that.
Hope you are doing well 🙏🏻
Thank you so much for sharing your story and experience. I have been sick for years they have no clue. Its really really really hard. ❤
Thanks for watching. It can be so hard when we have symptoms with no diagnosis. Keep advocating for yourself and seeking answers.
Thank you so much for posting this video! For the last 10 years I have have bouts of episodes of debilitating pain, numbness and tingling.drs literally have said ‘you are just a crazy female’! I have gone that route even though I knew they were wrong and nothing has helped.last year I started following the Wahls protocol and have gotten some relief but not enough .
Just had a work up at the rheumatologist and nothing showed up.🤷🏻♀️ I’m so proactive with diet and exercise that they all think I’m pretty strong but the people that know me all mention the dramatic drop in my strength. I just feel if I had a diagnosis that would help people understand a bit better when I am having a terrible flare up . Your story has inspired me to not give up . Eventually I will find the right dr interested in figuring out what is wrong🙏🏽
Thanks so much for watching! I encourage you to keep seeking a diagnosis. Keep asking for second opinions, referrals, and who you should see next to help you with your symptoms. Autoimmune diseases can be incredibly difficult to diagnose and you may need to see many specialist.
Good on you for taking a proactive approach with your health too! Diet and lifestyle changes can definitely help us to manage our symptoms.
Its all making sense thank you ❤ maybe it's more than I thought saw my neurologist today and the tests begin
Thanks for watching. Good luck with the tests. Let me know how it goes.
Thank you so much for your video - really helpful. The gatekeeper to my neurology department is very dismissive of my concerns. I have cervical stenosis which she believes is the cause of all my symptoms, three orthopaedic consultants are all leaning towards the possibility of an MS diagnosis but not her. I am also the kind of person that works better with more knowledge, it gives you a sense of control over your medical journey. Hoping to get through to her at next appointment, fingers crossed. Take care
Thanks for watching. Keep advocating for yourself and seek alternate or second opinions if needed.
Hi, not officially diagnosed but in my case there are no alternatives left. Practically any MS symptom you can think of I get it: numbness, tingling, loss of visions, pain, extreme fatigue, balance problems, brain lesions, bladder problems, muscle spasms etc. They offered me a lumber puncture but I declined because, after a mountain of research, an official diagnosis had become almost irrelevant. That's because it's still not possible to treat if effectively via medication. Some consultants will sing the praises of certain medications but the reality is you're much better managing it via healthy diet and exercise, something that is not pushed much sadly.
Your story was so well told, and likely mirrors the experience/journey of so many people with a chronic disorder regardless of whether it is MS, Parkinson’s, etc. Your encouragement to continue to pursue answers is excellent, along with listening to your gut when you do not click with what is being recommended by a doctor. (Of course I’m not saying ignore the expertise of these people - just to weigh the information and consider what is right for you after understanding the pros and cons of their recommendations.) I am impressed with the effort you made here to share the unfolding of your diagnosis and the way you exhibit the vulnerability and strength required to navigate these events. I think it’s really interesting when you share what was going on in your mind then vs. now and the evolution of acceptance of your new normal. Best wishes to you and thank you.
Thank you so much for watching and commenting. You are so right, many people have similar stories. The diagnosis process can be long and arduous.
You told my whole life story 🤦however im still waiting on the diagnosis, i been falling like crazy. Thanks for this story it was very inspirational
Dang, I am sorry you are still waiting for a diagnosis. Keep advocating for yourself and keep me posted! (And get a rockin’ cane so you don’t fall as much 😉)
@@EvenSoItIsWell they ruled it out now I'm getting a work up for lupus
U r helping me alor rn I have a lot of the symptoms and have had them for years in in the process of going to doctors and getting tests but I hear that voice " Angie u have ms "n my aunt had it n now that I have seen n heard a lot of this stuff I almost feel better to know what's wrong with me n I just hope my doctor can figure it out for sure cause my quality of life is greatly affected n thank u so much for ur insight n knowledge cause I need this so much right 💜💙💜💙 I'll be praying for you
Thanks for watching and commenting. I hope you get answers soon. I will be praying for you too.
Funny that your video popped up in TH-cam tonight. With Mother's Day this Sunday I have felt very sad the last two weeks. My Mother died going on 12 Year's ago. She had MS. I hear your story and it sounds so much like my Mom's. Multiple year's of mild symptoms. Doctoring and journaling through her life until my Grandmother died. My Mom's Mother. That's when the MS presented itself. Somehow, I'm finding some comfort in hearing your story and reading other comments. The comfort is coming from your strength. My Mother was the strongest Woman I have ever known. And I hear that same strength in your stories. Your so Brave for sharing your story to the world. Stay Strong and continue sharing it. You are an inspiration! God Bless! ✝️💜
Thank you for watching and your kind words. Your mother sounds like an amazing woman. Blessings to you too my dear.
My dad had MS
@@katrinanorris9690 I am sorry your dad had MS.
Great presentation. Always good to be informed both for a loved one diagnosed as a teen and myself. I have multiple autoimmune conditions so MS is potentially a personal possibility.I am plant based too and have read this helps. Unfortunately the loved one w MS has give up on a plant based diet. How helpful has diet been in your journey?
Agree there really are some pushy doctors out there! Glad you questioned the surgery. In our experience statins are pushed. Thankfully a plant based diet resolved the problem w NO side effects.
It is so frustrating that some neurologists are just unwilling to diagnose the MS, even with all the positive test results and clinical signs staring them in the face. It took me 3 neurologists and a lifetime of reporting symptoms to numerous Drs throughout my life. I finally got the diagnose at age 55. By then, I had so much damage that even though I am on medications for the MS, I still have some severe residual damage that has affected my life in a negative way. I’m a warrior though, age 65 and still going.
So glad you are still going despite the residual effects. Good on you!!
For 25 years we supported our state’s MS research group. It was just something I felt I had to do. For many years I have had little symptoms, like my right foot dropping for no reason. I also have mild scoliosis.
Then, 3 years ago, my daughter was diagnosed with MS at 36. She encouraged me to see her neurologist because of my long term symptoms. He didn’t do any tests other than questioning and checking my balance. He dismissed my concerns and rated me ‘weird but normal.’ (Thanks doctor!) I still have my doubts, but I don’t seem to be getting worse, so I just keep an eye on it.
In the same year my daughter was diagnosed, a friend of mine (same age as my daughter) was also diagnosed. They have very different symptoms. I am now my friend’s support worker. In Australia, MS patients can apply for funding to support them through the National Disability Insurance Scheme. My daughter is still able to work full time as a teacher because the funding provides a worker to clean and do household tasks for her.
Still, in the back of my head…‘Sheryl, you have MS.’
Thanks for watching. What an interesting story. It might be worth a second opinion. Keep me posted.
Thank you so much! Your video is helping me to clarify where I am on this journey. Currently, I am waiting for the results of a lumbar puncture. Have numbness and tingling, fatigue, bowel problems, and one lesion showed up on the spine. I started eating healthier and attending PT for balance issues. You are an inspiration. My next step is to move more and do strength training. Not a regular routine yet. Blessings to you and thank you for making the video. You are helping many people, like me.
Thanks so much for watching! I am glad you are finding it helpful. It is a journey indeed, isn't it? Please keep me posted on how you are doing.
Great video. I wish I found this when I was first diagnosed in 2018.
Thanks Kim! Glad you are here.
I have that voice in the back of my head. I’m just not sure how to go about telling my Dr to test for MS without him looking at me as though it’s all in my mind. Thanks for sharing!
Thanks for watching! I encourage you to ask your doctor. Bring a written log of symptoms and see what they say. It never hurts to asks! And if they don’t want to test, ask “what’s next?”… or “where do we go from here?” Or… “who else should I see to get to the root of the problems?”
Keep advocating for yourself. MS (and other illnesses) is very difficult to diagnose and can take time.
Thank you for sharing your story! I turn 60 this year and finally was diagnosed this past year- I knew in 2011 when I permanently lost the vision in my left eye when the optic nerve died one night. I follow similar concepts for wellness and also PTI have not taken any disease modifying meds to date not having found one with good enough data for my age - I’m curious what DM meds you have found helpful
Thanks for watching! Choosing a DMT is so personal. I chose Copaxone (on the generic now) and it is working fine. I would be open to changing if needed.
You are a star! Such a relatable video! And yes, to your question. Yes. yes. yes.
Thanks for watching!
Thank you, I was wondering how WFPB living would help. I'm glad I found your channel.
Welcome Zavia! Thanks for watching!
Watching your videos, and reading the comments, helps me realize I am not alone in this MS journey. We also share a very similar story. I have yet, after being diagnosed 15 years ago, to find a neurologist that will see me. So frustrating. Thank you again
Thanks for watching. I am so sorry you aren’t able to find a neurologist. Keep advocating for yourself!
Thank you for sharing this personal experience ❤
Thanks for watching!
Thank you for this story. It was so relatable. I had some vision problems five years ago, the optometrists couldn’t find any problems with my actual eyes, so he sent me in for an MRI. He found some lesions and thought it might be MS, but I should see a neurologist. At the time I was living abroad in China, and I didn’t have insurance back in the USA. I was more than happy to ignore his advice as my symptoms went away. “It must be I’m just getting older. Everyone in my family has poor eyesight.” Etc. I also ignored my tiredness as just being out of shape and in my 30s, and my clumsiness as well. Last year, I was hospitalized for a serious relapse where I was so dizzy I couldn’t lift my head off the ground. I still didn’t want to believe it then. I was 1 month postpartum, so I thought “maybe I’m just having a really rough recover from the birth.” When I finally got an MRI again 4 months later, it showed that: Yes, I have MS. I went through the same thoughts you did. It was like “ I can’t take control of having MS, but I can take control of all other aspects of my health to hopefully minimize the effects of MS or at least prevent other illnesses or diseases from being stacked up on top of my MS.”
Thanks for watching and sharing your story! So many similarities. Relapses often happen after having a baby. How are you doing now? And how is being a mom and your baby?
@@ChristineMattesonCYH good luck with your appointment. Keep me posted.
I'm surprised that you weren't sent to the MS specialist first, when it was first thought that you night have it, right at the beginning?
Right? In hindsight I wonder myself sometimes. 😉
Omg...I am so grateful that I landed on this! I'm now 56. At age 23 I was diagnosed with a rare congenital spinal condition called Klippel-Feil Syndrome. It is a "syndrome" meaning that many other factors/organs can be involved. However, my cervical spine issues were so severe that all the doctors (and then, I, too) just laser focused on the severity of my cervical spine and no odontoid process. I had 10 surgeries in as many years. During those years I would experience intermittent extreme fatigue, all sorts of symptoms that I rarely went to the dr anymore because everything was attributed to the Klippel-Feil but only because of the surgeries in the neck...nothing else was ever looked into. Now, I'm finally going to different doctors for a non cancerous brain tumor, double vision and frequent fatigue - fatigue so bad that I cannot get up some mornings to even make coffee or shower.
I'm so thankful. I wish you the best!! Thank you
Thanks so much for watching. I am sorry you are dealing with all of this.
Thank you for sharing your story! This is completely random but I really admire your memory and ability to recall important details and the timeline of your journey. My brain fog and memory are horrible but I’m trying my best to document and track everything to really own my journey with MS.
Thanks so much for watching. Documenting is a great idea!
I'm seriously suspecting ms for myself ( numbness, weakness, rls feeling unsteady, blurry vision, brain fog, cold hand and feet) but the worst by far is fatigue for me. The fatigue is my worst symptom. I'm so worried about going through a barrage of tests and a long amount of time only to not get any clear indication of diagnoses. Thank you for sharing your experience with this!
Aw, I am sorry you are going through all that. Please ask for the tests and keep advocating for yourself. It can take a long time, a LOT of tests, and a lot of doctors, but they will need to rule out everything else first. Keep me posted!
@@EvenSoItIsWellWill do. Thanks again😊
How are you doing now
I’m waiting on MRI results myself and I had similar experiences 4 years ago with herniated discs in my neck and a surgeon wanting to do surgery on my very first visit, first visit! Some doctors just want to make money over your health! Very sad. I’ve had so many symptoms of what I feel is MS - balance and coordination issues, off and on nystagmus and vision problems (already know I have swelling in both optic nerves due to tests done by my eye doctor), feelings of broken fingers and toes, times where my shoulders feel dislocated with days and days of pain, fatigue, ice pick feeling headaches and migraines where I can’t get out of bed, dizzy spells. Thank you so much for sharing your experience and being so compassionate and vulnerable, it means the world!
Hi Kristina. Thanks for watching. Keep advocating for yourself and keep asking questions and for referrals. I hope you get answers soon!
Please elaborate on effects of a plant based diet.Great informative channel! Appreciate all your insights
Here is another video I did on the benefits of a plant based diet th-cam.com/video/1xW6yVyxXPs/w-d-xo.html
Thank you Vickie for sharing your stories with us! I was diagnosed with optic neuritis back in Jan and my neurologist and I are still trying to figure out if it's MS or not. I went through 8 sessions of solumedrol IV infusions and I've had 4 MRIs over the last 3 months (I also have claustrophobia and have to be sedated)...all showed no lesions. Lumbar puncture looks to be next. Bloodwork also confirmed not Lupus, rheumatoid arthritis or any other inflammatory disease. I've had inflammation issues since 2019 and lately the amount of fatigue and lack of sleep has been worse than usual. Like you in the back of my mind I keep saying everything is pointing to MS...I just hope we can get confirmation soon. Have a wonderful day! ~Rachel
Thanks Rachel. I am sorry you don’t have any answers yet but keep advocating for yourself. And it is never too early to start taking exquisite care of yourself! Keep in touch.
Did you get the lumbar puncture? If so, what did it show?
How are you now
Same things happened to me. I had extreme fatigue and other symptoms that sent me to a urologist and a gastro. Would visit my primary care doc for something that could not be explained for years. Finally I was sent to a psychiatrist because they thought I was mentally ill due to all of the symptoms that couldn't be explained. In the back of my mind after searching on line the voice saying "you have MS" was there. It wasn't until I went completely blind in one eye that an eye specialist said "you will be diagnosed within 10 years with MS". Thankfully vision came back and still no brain MRI. Asked for one several times to no avail. It wasn't until I was covering the other eye in my shrinks office because vision was getting blurry that he suggested a brain MRI. They found lesions in my brain even without contrast and diagnosed me with MS. IT TOOK YEARS to finally know what was wrong. Was on many "depression"drugs, misdiagnosed and the list goes on. It still was shocking when doctor called me and I knew what he was going to say. Now like you trying my best to eat right exercise and do a bit of yoga in the mornings 10 minutes beginner but it helps. I wish everyone the power to be their own heath advocate as doctors who do not have this do not know how it feels. There are vision problems or walking problems or numbness and tingling so many to list. Its been over 10 years and have good days and bad days. Thank you for your video and speaking up. Suspect there a lot of people thinking they are just tired and having a few weird symptoms that they are on the wrong meds for.
Thanks for watching. So glad you finally have answers and are now able to name it, get treated and implement diet and lifestyle changes to support your body! You are so right even beginner, 10 minutes helps!
Same.
@@Alexe829 "Be kind, for everyone you meet is fighting a hard battle" 100%! Everyone has something they may be struggling with.
I have this, or MG.
Waiting on the blood work.
Thank you for doing this.
You are a brave, beautiful soul.
Keep up that gorgeous attitude.
The world needs you.
You're light is magnificent.
God bless you, dear soul.🙏🔥✨
And yes, I live in the land of denial, myself.😭😂
It's a lovely place here, but doesn't serve one very well now, does it??
Anticipate the best, expect anything, ie, the worst.😭🤣
I think I fudged that quote, but you get me! 🤭😁😘
@@themysticmuse thanks for watching. Keep advocating for yourself and asking for second opinions. You are right, denial is great, but having answers, getting treatment, and making changes to live healthy are important.
Thank you for your video!
Thanks for watching!
Thank you for your insight
Thanks for watching! I am glad you found it helpful.
you're awesome! I was diagnosed with MS in 2020. I so appreciate hearing your stories and encountering your warm spirit Thank you!
Aww, thanks Marcellus! You have made my day. I hope you are doing well.
Does it effect both hands or both feet? The numbness/tingling/prickling
@@DaVisionOutdoors MS is sometimes called the “snowflake disease” as I can affect us all differently depending on where the lesions present. I can affect one side or both sides.
@@EvenSoItIsWell any abnormalities on lab work that has been seen with Dx of MS.
@@DaVisionOutdoors there currently is no bloodwork to show MS. During the diagnosis process many tests may be done to rule out others problems.
Thank you for sharing your story!
I can remember when I was a kid would wake my mom up saying I couldn’t breathe because I felt like my chest was being squashed. She took me to pediatrician and they said it was my “emotions” and put me on a very strong tranquilizer. I was 9!!! Still to this day I’ve gotten no answers and some days I can’t hardly walk. I also have a lot of pain though. But labeled as a hypochondriac. My pain tolerance is pretty high so idk. Idk what’s going on. I have horrible HORRIBLE migraines.
Now I just take vitamins and antidepressants and just keep truckin.
Wow Chantal! Keep advocating for yourself and keep asking for referrals and second opinions.
I'm getting an MRI in about a month.. MS is on the list of possible causes. I have had this as a kid as wel!! I think I was about 10-12 and waking up because of this bizar pain on my chest, like someone was pushing so hard down. I have had this for at least 3 nights. Are you currently diagnosed with MS?
@@cheyennev1415 Hi! When you see your doctor for the MRI results be sure to mention the pressure in your chest. It might be something called the MS hug. Good luck!
@@EvenSoItIsWell thank you so much for reaching out! I don't like to be a google doctor but I think it's only natural to look up your own symptoms. I also have experiences with random shocks in my neck when I suddenly moved a certain way with my neck.. i always thought i just 'pulled something'. I'm wondering if having L'hermites sign means you always have to feel it when you bend your neck (which I don't), or if it could be at random moments? Do you have any experience with that?
@@cheyennev1415 I experienced that 15 years ago with my first relapse but it went away after a month or so. It is pretty common I think.
Thank you for this video!
Thanks for watching!
Thank you, Vickie, for sharing your story. Well as for me I was diagnosed with ms in May of 2019 and before being diagnosed with ms I was having dizzy spells that lasted seconds and then it will go away but I always thought because I didn't sleep well that night I will get that dizziness and then my dizziness started getting them longer now and one time it lasted for a good 2 minutes and at that moment of having dizziness I was experiencing a slurred speech and weakness on my right side of my body.
And how the days and months are going by, I have started to experience new symptoms like: pain on my ankles , numbness and tingling on my right hand and pain as well.
Thanks for watching! Glad you now have a diagnosis. Sorry you are experiencing new symptoms. Are you getting treatment and making changes to your diet and lifestyle to help support your body?
@EvenSoItIsWell Yes, I'm receiving a treatment called rituxan Infusion every 6 months
There's times where I feel very fatigue or times where I don't feel like eating 😕
@@laly1278 excellent! If you are continuing to see new symptoms give your neurologist a call. A different DMT might be needed.
My heath abruptly changed 16 yrs ago. I was misdiagnosed with fibro and asthma. I was actually having hug, fatigue, cognitive changes etc. I had this reoccurring over the years and each time I was treated with prednisone for “asthma”. Six years ago my arm went numb and MRI showed a large cervical lesion. Neuro said he didn’t know what it was and it eventually got better. Last year, I got optic neuritis and all the pieces came together. Even then, the neuroopthomologist said he would not have referred me to the MS specialist until I made him aware of my cervical lesion.
Amazing! I think there are many of us with similar stories of having to be our own advocates and seeing many doctors to find out what is happening. Good on you for telling your symptoms and previous results to your doctor!
Thank you for this. I am seeing my doctor today. I was just on a 10 day trip to Israel and my legs and body did not want to climb and hike -- very frightening. Today I have flu symptoms - unreal!! I do not want a diagnosis like this, but I also know I can't live with the pain and weakness. Thank you again!
Good luck today! Let me know how it goes.
@@EvenSoItIsWell My tests all came back and show no problems, but I see that my red blood cells look a bit low. I am asking about anemia, as she didn't seem concerned!! I still feel like the flu today, but the swelling in my legs and feet is significantly better!!
Sorry they were not able to find the cause, but glad your legs are feeling better!
My sister has MS. You are both in my prayers❤
Thank you Reina!
you are awesome, fantastic video and advice
Thanks for watching!
I was diagnosed with rapped remitting MS in 2015. My flares were bad and always included cognitive function. My last flare was 7 years ago I could barely walk, count...just lost strength to grip and strength all over my body. I got pregnant and went into remission then stopped all grains and Sugar, taking high dose D3K2 and some other supplements and havnt had a flare and gained most function back.
Thanks for watching! I am so glad you are doing better!
Such a blessing God granted you and your child!!❤❤❤❤
I currently don't know what's wrong with me, I just know something is wrong. I have lots of inflammation and am seeing a retina specialist in two weeks for vision issues I'm having. Thank you for sharing your story and making MS seem not quite so scary.
Keep advocating for yourself. I know it can be frustrating and the time it takes can seem like it takes forever. I hope you find answers soon!
@@EvenSoItIsWell thanks Vickie! I truly appreciate your willingness to share your experiences and thoughts.
Vaccinated?
I was having vision problems and here I have floaters and cataracts. Hopefully yours is nothing major too. 🙏
How are you doing now
Thank you for sharing your story. My mom was in denial a long time too and had some symptoms since childhood. She never really did get officially diagnosed but she knew she had MS too. By the time we were sure too much damage had been done already. It is so important what you are doing sharing your story and for we as individuals to learn and advocate for our own health. I could not agree more with what you said. Knowledge is power. Unfortunately, medicine in the US is big business. Sometimes you have to keep seeking the doctors who care and really listen. ❤ Love your spirit and your attitude.
Thanks so much for watching and the feedback. I am so sorry your mom had to suffer like that.
Great video...thanks for sharing!
I'm soon to be 67 and have had that little "you have MS" voice screaming at me for about 15 years now as I slowly graduate to using my new rollator walker. On my "7th" neurologist now with hopes and prayers I will finally get solid answers (he prescribed the walker). After all my years of researching my sometimes frightening symptoms I'm feeling pretty solid about an eventual MS diagnosis. It doesn't scare me anymore cause I've been living with these symptoms for so long now that I've grown use to dealing with them. "Baby steps, take one day at a time and be grateful for what you do have". God Bless!
Thanks so much for watching. I wish you the best with your new neurologist!
Wow. My journey sounds almost identical to yours. I had an episode about 11 years ago. After 3 days in hospital and mri, nothing was found. Went about my life with very subtle symptoms every couple of years until 2021 when my symptoms become noticeable/worse. I'm currently seeing a neurologist. MRI found nothing again and neuro gave me two choices. 1. Monitor/repeat scans in 6 months 2. Lumbar puncture. I, too, have that voice in the back of my head saying, "You have a MS."
Thank for watching and sharing your story. Keep me posted on how it goes.
Yeah, so many of these problems can take years to get a diagnosis. Glad you figured it out. i was having various symptoms & doctors dismissed me, but kept happening. I got some testing by endocrinologist, rheumatologist. Eventually after years was able to see a neurologist & was given a brain MRI & they said that wasn't MS. I don't think checked my neck area. I'm still undiagnosed on my issues. I know things it is not, but not what is is yet. My symptoms involve intermittent muscle weakness sometimes so bad that I can't lift my arm or stand up. Comes & goes, comes & goes, comes & goes. I've seen 3 different neurologists so far. Genetic testing for periodic paralysis was negative. My last neurologist said "You may never figure out what is wrong." I've given up on even trying to figure it out & just live with it, which restricts my life options. I stopped riding horses.
Also as with many with MS, I had problems with heat & often wear a cooling vest. My little voice in my head says that I have hyperkalemic periodic paralysis, but no diagnosis. Like you, I do what I can to optimize my health & strength & also just accept that my life has limitations. I've modified my diet a lot to limit potassium.
Thanks for watching. It sound like we have gone through some similar experiences. I am sorry you don’t have a diagnosis. I encourage you to keep seeking answers as your symptoms are affecting your quality of life. Perhaps seeing a physiatrist?
I have had muscle weakness on and off for most of my adult life. Finally got a diagnosis of Hashimoto's thyroiditis in my fifties. I now cannot tolerate heat. I am starting to think I may have MS but I am not willing to do a battery of tests since I find doctors dismiss everything one tells them anyway. Gluten free and dairy free have improved my quality of life.
@@tjjurake3506 I am so glad that you are doing better with the diet changes! It is amazing how making changes to our diet and lifestyle can help isn't it?
@@EvenSoItIsWell Yes. Too bad we didn't have the internet when I was a teenager!
Thank you for your thoughtful presentation.
Like so many never have had a specific diagnosis. Age 67 and memorable episodes of fatigue etc since age 10. Specialists I saw for a variety of symptoms thought I had underlying condition.
No primary care physician would take my descriptions into account.
I decided after getting Covid in winter of 2020 to self manage my long-standing condition. Physicians were so counterproductive that was the fork in the road. Long Covid has definitely made my many symptoms much more ongoing challenge.
But I am happier staying apart from a medical template. The system is chaotic and physicians stressed and non listeners.
I understand my condition..even if it has no defined recognition. I have extreme sensitivity to the changing sunlight. Sick over equinoxes and solstices. It is probably MS..but I had head trauma as a young child..so neurologically glitchy. I could well have a hybrid of cfs ms Parkinson’s….
Taking Vitamin D round the clock since 2010. I cannot maintain daily functionality without it. I added magnesium during Covid. Regular meals rest intervals double masked indoor settings..plenty of sleep.
Best wishes to so many out there. Thankfully there are plenty of ways now to be resourceful about healthcare management with daily internet navigating.
So agree with you..knowledge ..information is power. 🖼️🌟🌟🌟🌿✅
Thanks so much for sharing your story. Good on you for taking charge of your health and well-being!
Thank you for your video.
You are a beautiful person. I have been very sick Thank you
Thanks for watching. I am sorry you have been sick. Please keep advocating for yourself and taking exquisite care of yourself.