My MS Diagnosis Story: A Complex Medical Journey - Emotional
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- เผยแพร่เมื่อ 10 ก.พ. 2025
- In this video, I talk about my experience with a potential MS diagnosis, and how I've been dealing with it. I also give my thoughts on the realistic medical future and how I'm coping emotionally.
MS is an unpredictable and challenging disease, but it's also a hereditary condition that can be managed with treatment. In this video, I talk about how I'm dealing with my current health conditions. If you're feeling down about your diagnosis or just need to talk, please subscribe to my channel and feel free to leave a comment!
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Follow the journey of one person with invisible and visible disabilities, one day at a time. Everything from good laughs, to serious conversation about society and what needs to change.
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#multiplesclerosis #chronicillnesslife #chronicillnesslife
Well spoken and frustrated woman who is trying her best to cope with complex medical issues mostly on her own. I hope a definitive diagnosis is finally found for you soon. My daughter in law is dealing with similar issues for the past 2 years. Still has episodic issues and no answers in sight. We just wait for next symptom to come and go. What a way to live.
Totally, don’t lose hope, got to take it one day at a time. Some are just harder then others.
I completely understand I have been feeling awful for months and I feel like the doctors are of no help. Wishing you the best. Stay strong dear 🤍
Thank you so much! Right back at you!
Hello~i too have crohns n like you the emotional neglecting system with my MS! I too for 5-6 yrs have suffered and worsening! It is tragic my prayers go to you! Im in usa AZ ! The stress of no help puts me in huge flare ups!
I'm in Newfoundand Canada. I too expect a MS diagnosis. I have 6 pages of recorded symptoms that check the box for MS. I'm told it's a 3 year wait to see a Neurologist here in this Province!!!! Our Health care system is really gone. In the meantime, my symptoms can be traced back to 1997 and possibly earlier. I know walk with a cane because I don't want to use a walker or wheelchair. I'm tripping all the time because my left side is weak and my foot doesn't always clear the ground. Total fatigue all the time, difficult swallowing and even choking on my own saliva and vision loss. I know it's not great to assume MS but there are worse diseases to be diagnosed with and at this point I just want to know and have treatment options. MS is no longer considered a death sentence as it is now highly treatable. Stay encouraged. I hope you get your answers soon. If you haven't already...look up Dr. Aaron Boster MD on here...he is an MS Dr in Ohio....very informative and encouraging. {{Hugs}} Tonia (BTW.. I lived in Winnipeg, MB for 2 years and visited several times since😊)
Hang in there, safety is number one. I absolutely love my wheelchair and walkers. That MS is my futur or not, I agree knowing your options is what we all truely want.
I am going through the exact same things as you here in NB Canada🥺. I am literally choking on
My own saliva, dizzy spells, can’t talk right sometimes, words don’t come, every symptom and more. Was told 9 yrs ago it was just stress. Now waiting to go through this all again bc I am not well at all and getting worse. Group hug to all of us that are suffering alone 😥
I'm in Newfoundland too! What area are you in?.. I've been having alot of symptoms as well I started with optic neurities and have been have extreme numbness and tingling in my arm and legs and feet...praying I don't have to wait that long to see the Neurologist. I did see one in 2018 for sleep apnea and Narcolepsy but yes heard the wait times are bad now.
Bless your heart from a 55 year old women who after 5 years has been diagnosed with ME/CFS , so basically left to get on with it still waiting for help and support from a clinic which is non existent in the midlands and unable to work now . My heart goes out to you keep fighting lovely this is our lives we are fight for 😢
Keep on the good fight! We all deserve the life we want to live!
I feel your pain, your frustration. I have been suffering for YEARS. Probably 15. Over the last couple years my symptoms have been debilitating, my doctor is amazing, but I also feel like I am fighting a system.. I have been told so many different diagnosis, and I am just barely getting by. I feel your pain. I am in Ontario, and the healthcare system is awful a lot of the time. I am just hoping for answers too.
Hang in there, know you’re not alone! I hope we both can find answers soon!
You are AMAZING 👏 ❤️
You have given me hope and strength .
I too, await diagnosis, but it's now obvious I have it and am looking progressive. Can't get to see a neurologist for 18 months. I'm not going to waste my life awaiting a definitive diagnosis. The waiting means my life on hold. I have to give up my professional career and selling my home because I can't afford it nor manage it.
Each day, we need to see the blessings we have and to try to find the positive in a dark situation.
You are a brave woman, and you know your own body. Try to relax into it. Give your problems over to God and try to find the peace from his love and care for you. This issue will lead you towards a new direction. I can see you as a counsellor for those going through this situation.
Continue shining bright, and thank you for helping people like me and those around the globe who find comfort in your words.
Much love ❤️ 🙏
Thank you so much for the kind words! I hope you get some news soon!
love you Steph, breaks my heart that you have to keep fighting and struggle with your chronic pain. Hang in there kiddo,
Love m'oncle Gab
Milles Merci!
I have not gotten an official ms diagnosis either. I have been suffering on and off for decades. Now barely being able to walk is about the last draw with all the other symptoms. One doctor saw lesions that he claimed were MS. The other doctor said it was highly unlikely. I have the "unknown" symptoms and "madness." One day I was WALKING 5 miles a day and now I can barely walk at all. Right now, I am at my wits end. I have seen one neurologist recently who was of no value at all. My heart goes out to you. Don't give up. God bless you. If I had a diagnosis, people would believe me. I am in such misery. I have all the symptoms too. I nearly collapsed on the street 4 years ago when only a few days later I walked 5 miles a day. 20 years ago the numbness started. I know how you feel. I am diagnosed with nothing. . It's a nightmare. However you are young. I beg you don't give up!!!!! I am 77. I know it sounds simply to make it old age makes perfect sense. It's not I have been around old people. This is not your classic old age case. My problems began when I was young. An undiagnosed illness is a mental torment as you well know. Let's fight for more research so someone like you can benefit.
Thank you so much for your kind words! 💜
my wife may have it ...17 months
Have you asked your doctor about FND? I was convinced I had MS. Turns out I was wrong. I am now officially diagnosed with FND after years of frustration, worry, torment, exhaustion, pain and discomfort.
Best wishes
I am going through this as well since 2022. Everything else has been ruled out. I have had every test to rule out. I’ve had two events 2 years apart with different neurological symptoms that left me without being able to work. I struggle to walk and take care of my kids. The 1st one I fully recovered from after a full year of slow and steady hard work. Now I just had my second in June and I am still recovering. MRIs show nothing. But I know deep down that I do have MS. I believe you. I do. I feel like I have no support from doctors other than they order MRIs. They do not assess me or see me except my yearly app. It feels hopeless at times. Thank you for sharing. ❤
Hang in there, know your not alone! Keep doing the things you can and know you only control so much. It’s hard to not know what the future holds but quite frankly learning to live more in the moment has not been such a bad thing (I could do without the pain though 😜)
Have you had a lumber puncture yet ? That’s how I was diagnosed with MS. Please ask for one. Love from the UK. X
Thank you for the thought, I received one years ago and it was inconclusive. It’s in my 2023 goals to get an other MRI and request a puncture. Will see how far we get lol
Just the lumbar puncture gave you the diagnosis??
But have you looked into Dysautonomia? Because I faint and have since I was 12. I’m 29 now and just getting told why after 17 years. However, I had a “stroke” like attack 6 months ago and am currently awaiting mri results for suspension of MS
I’ve also been suspected of having POTS or general dysautonomia but most of my test have come back inconclusive as well.
I have a seizure disorder and MS my seizures are not detected by EEG. They aren’t that reliable according to my neurologist because you have to have an episode while the test is being performed 6:32
Good to know, will be having an other EEG under stressful sleep deprivation will see how my body reacts.
So sorry you have to go through all this. I started my journey 2017/2018...still not diagnosed with anything. Next neurology appointment Sept then spine mri dec. They are saying they think it might be ppms. Which would make sense as it has fewer lesions on mri cuz there aren't many flare ups.
Since you've still been on this journey for so long have they considered ppms..it's clear u have had a long tiring journey
I guess different provinces have different criteria. Ppms needs only 2 of the 3..2 or more lesions in brain or spine, progession worsening over a year, postivie oband in lumbar puncture .
Good luck with your further appointment in the fall. Things are so different. I think the importance is making your you fight to feel better. Though having a diagnosis is reassuring and would be nice some journey take us through different paths and the focus should always been having happy filling lives :)
I can't express how much I relate to and feel these emotions and thought processes. Doctors have gaslit me since a very young age, but now I am pretty certain that I know what I have, but I'm just trying to get a doctor to believe me... It's exhausting
Keep up the fight, I know it can be exhausting but we must keep pushing forward for ourselves and loved ones!
MRI and spinal tap is the same for both men and women... McDonalds criteria is agnostic to gender (lesions or oligoclonal bands), I say this as a male diagnosed with MS less than a year ago :/ Wishing you all the best and hope you can receive some clarity.
Thank you 😊
So you was diagnosed with the spinal tap?
Ive got symptoms of MS but had MRI of brain and spine and all clear. What else can I do? Do I rule out MS? Thanks
@@hellomynameis5520 I am no Dr. so would definitely follow up with another appointment to see if there are other diagnostic tests they can perform. Thankfully the brain and spine are clear, that seems to be a good prognostic indicator. One thing they could also do, but rather unpleasant, is a spinal tap to rule out oligoclonal banding. That is also a marker of MS. What symptoms do you currently have?
@@__Wanderer Hi thanks for your comments, much appreciated. I also had a brain and c spine scan 3 years ago when I had symptoms as well but was told it was a bulging disc / nerve compression. Then recently I had a brain and full spine scan and all clear. My symptoms since January this year, slightly memory loss, cognition feels off, tingling all over body random places, my walking and gait feels impaired , something feels off with me. Gp’s, neurologist doesn’t think it’s MS. Normal neuro exam and OCT from optician as well. Just to let you know my dad has MS. I know it’s not hereditary though. Thanks
I’m so sorry your dealing with this 😢Completely understand. It’s hard when you know your own body . You live with your symptoms and no one will listen . I’m currently using a walker and dealing with symptoms myself. Sorry physical therapy and medication just don’t help. It’s frustrating and I’m just doing the best I can. Taking it day by day. As well as myself , dealing with this. Waiting for answers. Really hope you get yours to.
Why not get a lumbar puncture and a spinal MRI?
Done and done :)
@@slowrollwithsteph ...and what was the outcome? Bc from what neurologist has told me, it’s very unlikely you have MS if your lumbar puncture is negative.
Has anyone mentioned fibromyalgia at all? Your very brave hun, listen to your body like you said you know it best x
@@dermlover1I’ve had symptoms of MS but brain, c spine, thoracic and lumbar spine scan came back all clear. Also neuro exam normal and also OCT scan as well with the optician. Is there a likely hood I have ms after all these tests?
Thank you for this 😢 because I'm going through the same thing right now five years in all the symptoms no answer x
This is heartbreaking. Im so sorry. Take care. 🥺
Thank you Tara!
So glad you showed up in my feed. My daughter is in the same situation. Unable to walk. Right side weakness, numbness, clonus, spasticity, dystonia and the fatigue 😩
The neurologist sent a referral to university. No answer yet if they will even take her case. I hope you get the answers and treatment you deserve. 🫂
The search is continues and ongoing but we do hope to have a big update in the next few months that I hope will help other people. I hope your daughter gets taken in by the university! I hope they can help!
hello i hope all is well! i’m 22 female from the south eastern part of the USA. i received my MS diagnosis on July 23rd of this year. i’ve been dealing with the general symptoms since adolescence, but my first severe episode occurred in early May. i lost vision in my right eye and the Ophthalmologist i visited couldn’t find anything wrong with my retina, cornea, no nerve damage, there was nothing wrong with the eye itself. he sent me home with a potential MS diagnosis and an official diagnosis of Optical Neuritis. (in his words) this is one of the most common symptoms of a MS episode. so he ordered MRI’s of my brain and optical nerves. later another cervical MRI (of my spinal cord). these images show multiple lesions some new and some old, however this alone couldn’t grant me an official MS diagnose so they had to do a Lumbar Puncture/ Spinal Tap to look for Oligoclonal bands in the CSF. I was then officially diagnosed about two months later. I know my experience has been a blessing considering the state of the medical system in America today. i’m beyond grateful that God made things work out exactly how they were supposed to. i’m starting Kesimpta within the next two weeks, my first shipment arrives in two days!!! i’m very excited to finally start medication, and hopefully get relief from the other daily symptoms. to everyone out there struggling to receive a diagnosis or battling the every day fight that is MS, i pray God will comfort you durning this time the way he has comforted and guided me. i pray you all find the perfect team of doctors and nurses that will fight for you and your well being. i pray you all find peace and relief soon! if you took the time to read this far, thank you and best wishes to you! 🩷😊
i hope my comment didn’t come off in a bragging way at all! i was trying to bring hope to anyone reading! i had my fair share of bumps along the way and a few dismissals by less concerned doctors. but i wanted to share the positive aspects of my story so please know my intentions were pure 🙏🏻
Not at all! I am glad you received a fast diagnosis and I hope the medication is helpful and release you of the symptoms and pain of the dreaded disease. 💜
I feel you. Been experiencing symptoms for years but they didn’t see anything. Was diagnosed with fibromyalgia but the eye pain andloseofvision when I was exposed to sunlight and pain mainly on my right side is worst than the left side. Will be undergoing another MRI ofthe brain and spine as well. I hope now I will have the official diagnose now. Had EEG last 2021.
Hang in there! Only you know when you fell right with your diagnosis, trust your instincts and keep pushing till you feel it’s right!
I just found your channel, I hope you're doing better! Just curious as I don't know that much but if MS is lesions on the brain can you have MS without lesions on the brain, it that is the actual diagnostic criteria of that specific condition?
Yes, you must have a lesion in Canada to be diagnosed with MS however many people suffer with symptoms for years before a lesion appears. It’s not uncommon to suffer for up to ten years and having multiple MRI before a lesion appears, especially as a female.
I’m going through the exact same thing here in NB 😥
Why are doctors so hesitant to diagnose MS? You bring up a really good point, if you watch other content creators diagnosed with MS, the vast majority of women were ignored. Many doctors downplay symptoms and even when strong numbness/tingling Sx presents, doctors move like molasses to do any testing
It’s a good question I’m not sure, without a lesion you can not get a MS diagnosis in Canada.
Fighting the same fight, and I HAVE multiple lesions .. :/
You know your body best keep fighting.
Crohns can affect nutrient absorption. Have you had Functional medicine nutrition testing
I have and are actively working towards nutrition goals. Though more testing is needed due to my ongoing issues and complex underlying issues that are not diagnosed as if yet.
Hi sweetie, its been a year since this video and i eanted to check on you.
I lost my right side in 2007 that was after a few years of falls and a lot of kidney stones, swallowing and orher gi issues.
I did physical therapy and was put on cane/walker/scooter after completing physical therapy. I had spots on my brain but i also had a B12 diagnosis, arthritis and a few other diagnosis that would send us down rabbit holes. In 2016 (9 yrs later) i lost the feeling from the waist down and that mri showed dymeltaing disease. Meanwhile i was progressing the entire time. Mobility got worse etc.
I had soul mederol in the hospital snd after that 2 weeks i went back to my pre hospital disability/ability but some risidual stuff. In 2018 i was ferling the best i had felt since about 2005 and my nero was curious what could have changed and he did an MRI and i had a huge lesion on my front temporal lobe. Tjis was when i finally got my diagnosis. Im not sure if i cried because of the diagnosis or because i was releaced to finally know what i was fighting. So yrs a decade to get a diagnosis.
About 6 months later i started declining rapidly and was told i have progressive MS and it was at this time it all fit. My doctor said because of the kind of MS i have it was like a long stroke and during the "scarring" part is when i declined the most. Think like a broken bone that gets fixed but then grows a mass or arthritis.
I no longer get to use a cane its eitger walker or scooter/wheelchair and i spend a lot of time bed bound but now tgat i know what im fighting i can learn on ways to help fight it. I now also have medication induced Cushing syndrome because all the steroids and im very over weight and ecen with the diagnosis people are rude and just herks saying things like "if you would just loose weight you wouldnt be in that wheelchair etc." when after 3 banys i was under weight. So people suck!
I hope you have some answers now but if you dont i want you to know i stand by you and you can reach out any time. Sending you prayers.
Thank you for your beautiful message! Unfortunately things have simply progressed with no answers. We keep putting one wheel in front of the other and taking one day at a time! Thank you for sharing your journey to diagnosis. It’s stories like this that made me want to start this channel! 💜 I hope one day we all find a little more stability for the chronic fighters!
How are you doing?
@slowrollwithsteph how are you doing ? Prayers for all
Unfortunately not much more to report, but we do have an update coming soon with a health update. The last few months have been challenging and complex but with not many answers. We keep putting one wheel in front of the other and taking one day at a time.
Have you received a diagnosis? Fellow Canadian here. Had optic neuritis on March and they did a brain MRI which showed no lesions but they didn’t do my spine so now I am waiting on that
No diagnosis yet, still more testing, was in hospital again in May, new update video coming soon. Keep me posted would love to know where it goes from there. I’ve been pushing for a spine MRI and can not seem to get anyone to approve it.
My daughter has Functional neurological disorder. Have you discussed this with your neurologist? My daughters symptoms very much mimic those of MS. Loss of sensation, tingling and pins and needles, fainting, non epileptic seizures, complete paralysis. Not being able to talk, tics, bladder and bowel problems, severe pain, intermittent deafness and anxiety and depression. It’s literally a roll of the dice each day. Whatever is going on, I hope you get some answers soon
I have, and it’s currently my neurological diagnosis, however, it’s a diagnosis of exclusion and it’s an umbrella disorder and can be misdiagnosed often. I see it as a working diagnosis not the end goal. 💯 a person thing.
Ever look into mold/cirs/lyme ?
I’m sorry you’re going through this. MS can be very frustrating. And these days I don’t trust any doctors at all anymore . How would you go this many years without any lesions while having MS? Is that possible? I’ve had MS for 20+ years and I have so many lesions you can’t even count them. They just keep racking up over the years. Is it possible really to not get any lesions over that many years. This is an honest question, I really just don’t know. I know every case is totally different, but I would just assume everybody gets the lesions because that’s what MS is right? Maybe it is something else. I just think you shouldn’t shut your mind down to other things because if it is something else and you get the wrong treatment that wouldn’t be good either. I hope you get this figured out and get on the proper treatment so that you’re not going through this craziness anymore.
Isn’t socialized medicine great? It’s weird you’re saying you’re ignored because you’re a young female, bc MS is MOST COMMON In young white females. So why would they ignore you when you’re the hallmark MS patients? Something doesn’t add up.
This sounds like my me/cfs story. Im sorry mama❤️
You need to start taking vitamin D, there is a very strong correlation with a lack of vitamin D and MS, the sprays are the best as the absorption is better.
Thank you for the thought! I’ve been on high dose vitamin d for 5 years now but should probably get it checked again. Added to my list! :)
@@slowrollwithsteph take care, if you find it is not at an optimum level look at the sprays, I use better you with K,2, the K2 works with the vit d
Thanks so much :)
@@slowrollwithsteph you are welcome
I’m so frustrated for you.I have been off work since Nov and can’t even get short term disability until I get a diagnosis.On a good day I can walk 30 ft before the exhaustion makes me faint .I hope you get some help soon sending love
Thanks totally understand, it’s not an easy road but got to keep moving forward
I am going threw the same thing I am having muscle spasm right b4 I started looking at this. I’m having extreme pain and I can’t sleep
Hang in there and never stopping hoping :) - some days are harder then others but hang in there :)
Lumbar puncture can lead to diagnosis.
Feel for you.
Appreciate it! 💜
Only an MS doctor can diagnose correctly. Regular neurologists will misdiagnose like what they did with me.
Good to know! I’m waiting for a referral to a specialist so hopefully that will help!
Is there a symptom video of all your symptoms? ❤
Unfortunately not yet, we are working on one, but it’s been a complex and long journey and the video will most likely be over a few parts. In the works!
Try to hang in there Sweet lady.Your story is so sad. I pray you find answers.
Thank you!
Have they checked for b12 deficiency?
Have they done a lumbar puncture?
I know how you feel. I’ve had symptoms off and on for close to 20 years. I’m finally getting that MRI.
There was once a time people didn’t know what MS was. It was a mysterious illness. There is a possibility that you might have a rare neurological condition that might mimic MS.
The unfortunate reality is, you won’t find MS patients without lesions and without Oligoclonal Bands present in the CSF fluid.
I wonder how thorough they’ve been with your neurological assessments.
Have they tested for Hoffman’s Sign, Babinski Sign, Romberg’s Sign? I ask this because I think maybe you might need medical advocacy because when it comes to MS and other illnesses they dismiss heavier people significantly more. Have a 3rd person who is well spoken and doesn’t usually face discrimination go with you to your appointments. Sometimes with a 3rd person they’re more likely to do a more thorough assessment.
But also consider that there’s so many MS mimickers that they really can’t diagnose MS based on symptoms alone. You did an EEG but did they send you for an EMG & Nerve Conduction Test? Because your symptoms could be more related to upper and/or lower motor neurone function as opposed to any nerve damage.
But ya, I’ve had symptoms off and on for 20 years with no official diagnosis and maybe I’ll finally get that diagnosis after 20+ years of symptoms.
Hang in there.
Thank you so much for the message. I have had many of these test done and many have come back negative or normal. Will be moving forward with additional testing in the fall and will see what will bring.
Did you get diagnosed Stephanie? Thanks
Still no more news on my end, I hope to have an other big test in the next year. This will hopefully give us some additional information.
@@slowrollwithsteph what’s tests have you been for since have you had MRI Scans?
I feel this so much especially today. I'm in the US but I'm beyond frustrated and am blown away by our broken system.
Right!? I feel for Americans even more you pay and get just as bad service most
Of the time!
I would say it's in the family of MS...Maybe dysautonomias. Central nervous system disorders....
Covid did not help as well....
Does anyone here have EXCRUCIATING pain BEHIND both eyes that have caused a severe decline in vision 👀???
Pain, yes, it causes me headaches and when it gets bad it causes me sensitivity to light but no decline in vision.
Don’t give up
Thank you!
Mri spinal tap!
Blacking out isn't from MS it doesn't do that?
Do you have Vitamin D deficiency?
I do, as well as Vitamin B 12. Which we manage with supplements and injections.
You are SO wrong about MS diagnosis.
Please try to LEARN about it BEFORE you put false information out into the world.
SMDH
Spinal tab!!! Ask for a spinal tab, this is a other way to diagnose!!!! Be strong!! Take 3 years to diagnose me with ms!!!
I had one done but it was a long time ago, pushing for a new one.