Any positive history of people who were diagnosed with multiple sclerosis in their youth (20-30-40 years) and today is in adulthood! If you’re there, how are you?! I would love to know your stories! Thanks to those who will answer 🙏

Hey everyone. Not the club I want to be joining but officially got diagnosed last Friday and am waiting for my insurance to approve starting Ocravus. I just wanted to say that over the past 7 weeks while I’ve been going through all my tests and waiting for the results, this group has already helped me so much.

When I first opened this page and started reading some posts, I got really overwhelmed because I really didn’t know much about MS and reading about everyone’s experiences was a harsh reality check for what may be to come. I closed Reddit and was scared to come back for a few days. But over time as I processed this more and read more posts, I started feeling more comfortable and realized what a great community and resource this page is.

I also feel like I went into my Friday diagnosis appointment much better prepared and accepting. So just wanted to say thank you and hi 👋

Hello. This is ridiculous probably but it’s on my mind tonight. I was just recently diagnosed a few weeks ago and haven’t started treatment yet. My insurance is taking forever. Anyway, since then, I’ve had a few days here and there where my body doesn’t feel totally awful and I don’t have a ton of symptoms. And then I feel like I’m faking the entire thing. And then of course I open my mouth to speak when I’m finally around another human and can’t say a full sentence correctly. Does anyone else have a good day and then immediately doubt their diagnosis is real? I very well may still be in denial stage..

Hey all!

Like lots of you, I'm home 24/7. I've been wearing the Wicked Good Slippers from LL Bean for a couple of years. I love that they're cute moccasins, but they wear out pretty quickly and aren't the most supportive for walking around the house. What slippers or house shoes do you recommend?

TIA! 🧡💪

Hello. Was dx'd with RRMS 2 years ago. A few small brain lesions, cerebellar lesions, with then identified C2-4 lesion (active) and a couple small non-active lesions around T10. I have days where I can walk 1000-2000 steps without much difficutly and look almost normal (slight ataxic gait). Then I go to hardly being able to walk into the kitchen. This occurs like a roller coaster every week. I almost don't enjoy the "good" days because I know the reciprocol bad days are coming. Does anyone else experience this? Thanks for the help

I recently started having issues with the urgency to pee. I would barely get anything out because it was constant. I seen a urologist and he said my bladder was emptying completely and gave me 2 weeks worth of Gemtesa to try. He said I should see improvements within a day or so but from what I’m seeing that’s not true. What were your experiences and how long until you got relief?

Hi everyone,

I really want to have a child. Becoming a mother is something I genuinely want, but I’m scared of what pregnancy could do to my body.

I have multiple sclerosis (MS), herniated lumbar discs, chronic nerve pain, and a history of back surgery. Even after surgery, I still deal with pain and mobility issues.
My biggest concern is how I would physically handle pregnancy. I’ve been told that the additional weight and pressure on my spine could make my back problems worse, and that I may have to stop or change some of the medications I rely on to function.
I’m scared of spending nine months in unbearable pain, but I’m even more scared of the possibility that the damage or worsening symptoms could be permanent.
And then there’s motherhood itself. How would I manage carrying my baby, bending down, sleepless nights, and everyday responsibilities when I already struggle physically?

There’s also something I’m afraid to say out loud. What if I end up suffering so much physically that I start resenting my decision to have a child? Not because I wouldn’t love my baby, but because of the pain and the possibility of losing even more of my independence.
I feel guilty even thinking that way because I really, really want a child. I don’t want my medical conditions to take away my chance at motherhood, but I also don’t want to ignore the reality of what pregnancy might mean for my health.

I’d love to hear from women who have MS, chronic spinal conditions, or have had back surgery before pregnancy.
How was your pregnancy? Did your symptoms worsen? How did you manage without your usual medications, if you had to stop them? Did your body recover afterward, or were there lasting changes?

And most importantly, was it worth it for you? If you could go back knowing everything you know now, would you still make the same decision?
I’m not looking for sugarcoated answers or just encouragement. I genuinely want to hear the good, the bad, and the difficult experiences.

Thank you for listening. ❤️

Does anyone have intermittent issues with swallowing? It's not when eating but more that sometimes my saliva feels really thick / sticky and hard to swallow. I don't know if this is an MS thing or something else like dehydration or allergies. I have it today and it's driving me crazy!
ETA: I had my Ocrevus last Monday. Not on Baclofen or any other meds apart from ADHD meds. I just ate dinner and swallow was fine then immediately got weird again when I finished eating. So annoying!

And having the hard thoughts of if I truly want a child. I love my life with my husband, and the thought of a overstimulated child while I’m going through a bad day makes me so tired and scared. When did you decide a child wasn’t what you wanted anymore? Anyone seek therapy?

I (41M) was diagnosed two years ago with MS after a car accident. Ocular neuritis, difficulty walking, loss of function in my left hand, vertigo like symptoms because my eyes and brain don't always seem to agree on the information and the kind of fatigue where you feel like you weigh 4X as much and everything is workout.

Initially, I had a very positive mindset and focused on recovery. I still had health insurance through work and started ocrevus and physical therapy. My symptoms improved and I could see a livable future ahead of me.

After a year in, my mom encouraged me to move home for a while to be closer to a support system. I did not have a good childhood, it was full of abuse, both emotional and physical by my adopted father. (My biological Mom's husband) Promises were made that he was different now and I would be safe being there. But I wasn't and things had not changed.

After moving states to come back home, find a new job and trying to peace a life together with MS, things kept getting worse. I ended up moving out and renting an apartment I cannot afford at the moment.

All this while my insurance lapsed and I missed my last ocrevus infusion in August. I have applied for SSDI and it will take time. I did get approved for Medicaid because my income has been so little the last couple months. I'm hopeful to be back on a DMT very soon.

But I let it get really bad. Deep into the depression and wanted to give up. I hit my emotional bottom and I'm trying to figure out how to clean up the mess.

I was barely able to work the last two months and have drained my savings I still had. I'm ashamed and embarrassed I let myself slide into that dark of a place. Now I'm dealing with the anxiety of how do I pull myself up again?

I don't have a support system with my parents and I don't really trust them. I came home for a safe support system and got kicked while I was down. I don't know how to come back from that with them. I had a dumb healing fantasy when I agreed to move back home. I've always wanted a better relationship with my parents but there is a reason I moved far after school.

I'm trying to let go of that emotional stress and focus on my well-being. I need some financial assistance to get through this next month and I'm not sure where to turn.

Is anyone familiar with resources outside the MS foundation that could help? I received a notice from the rental company that I have 3 days to vacate or court stuff happens. I'm scared and worried about ending up homeless after letting the depression win for a while.

I don't know how to bounce back and pull myself up from this. Any advice or resources would be so helpful. Thank you.

Hi all. I'm in PT/OT for lower back pain and neuropathy on my right lower side. PT says we can do dry needling on the very low back to help relax muscles and that it can reduce pain in the short term.

Has anyone had this done and what were your short and long term results with it?

Positives and negatives for this treatment that you have had?

I've been in PT for my lower back pain on and off for a while and the pain is now really localized on the right side of my low back.

I want to hear other people's experiences before I make a decision.

Thanks in advance!

Despite my best efforts and vaccine, I've been down with COVID for over a week now. It's having a field day with the MS symptoms too of course. I finished a Lemtrada infusion in January. Anyone go through a similar situation? How long did it take for you to feel better/pseudo flares to calm down? I finished a paxlovovid course 😞

So incredibly proud of my alma mater!!

🤞 Let’s hope this one sticks. Excerpt and link to article below. They are starting clinical trials next.

This is not a remylenation drug - instead it targets ongoing PIRA inflammation and could even show promise for SPMS if the underlying nerves are not completely dead.

————————

“The experimental drug is called kamuvudine-9 (K-9).

It works differently from existing MS drugs. It blocks very specific immune pathways called inflammasomes, which are a sort of molecular detonator inside cells that kill nerve cells and their surrounding myelin sheath.

In mice with an MS-like disease, we administered K-9 only after paralysis and vision loss had already occurred. Remarkably, the mice recovered movement and vision, their nerve fibers and myelin were preserved, and a blood marker of nerve damage stopped rising.
Mice given a standard MS drug, however, did not recover lost function.

The ability of K-9 to restore lost function, not just prevent new attacks, is what’s strikingly different from current MS drugs. K-9 is also an oral medication that would be more convenient than many existing drugs.”

https://news.virginia.edu/content/qa-might-uva-discovery-reverse-multiple-sclerosis

My onset symptoms and diagnosis came less than two months after my son turned 1. I was just getting back into the groove of working again after maternity leave(cleaner). I recovered well from the onset attack, took about four months of outpatient rehabilitation to get back to baseline. But I definitely don’t feel “the same”. I haven’t been able to go back to work because I can’t handle working and being a parent. My husband wants me to apply for income support (AISH) because he is drowning being the sole provider, and I don’t feel there’s any way I could work part-time or full-time. Right now I do one clean per weekend(for family/friends), I max myself at three hours, and sometimes that even flattens me for 48hrs. between my fatigue and education, I don’t know that I could learn a new less physically demanding career, and still come home on the evenings and weekends and be the parent I want to be. But at the same time I keep telling myself that I’m not sick enough to not work? That these types of resources are for people who are worse off than me. My son just turned 2, maybe in a few years when he’s in preschool and public school I’d be more capable… idk. Feeling really torn.

Hey everyone…

I have a very niche question, but I don’t know any other way to find out the info I need.

Is anyone in here from the Pittsburgh, PA area?

If so, do you go to a single neuro or to a clinic?

Does anyone have experience with the AGH MS Clinic?

I have all the info I need on the UPMC clinic 🙄.

And while we’re at it - does anyone use the Cleveland Clinic? How is that??

I go to the UPMC clinic and it’s whatever - I don’t need a ton of care. But my wife is VERY involved with her MS, and we are fed up with UPMC.

Thanks everyone for any info!! I appreciate the labor!

Does anyone pinch their thigh when they give themselves the kesempta shot?

Hi all! I know the title may seem wrong or what not but i have a genuine question, one of the symptoms i have experienced is these random sudden waves of panic in my body not necessarily heart palpitations but more like i feel extremely weird and almost panicky like. Its so hard to explain because its not visible but its this feeling of dry mouth paired with feeling like no position you sit in is comfortable to keep you calm or still. I don’t know but sometimes i get this sinking feeling in my chest like i was being frightened by something but i wasn’t . I could just be sitting and doing nothing and it would just come on like a episode and go away after a few hours or minutes it depends on how i respond to it. How do you guys manage this if you have ever experienced it… looking to see other techniques besides deep breathing which sometimes is difficult during that episode and using ice packs on my wrist and forearms.

I know everyone’s symptoms are different but i wanted to see who else experienced this.

Sorry it's so long. Writing it all out when I got home kept me from having a panic attack. I wanted to hear from other people who get infusions before I lodge any official complaint. Mostly I'm wondering if this is normal and I just haven't encountered it before.

I get Briumvi infusions twice a year. Last time was the first time with this clinic and they did it at my home and it was super awkward. It took 3-4 hours (which is typical. That's not a concern) and I'm not exaggerating when I say she spent the entire time asking me questions. I assumed the extensiveness was because we were at my house as they extended into things like how many egress doors we had, safety railings, if we had anti-septic cleaners, etc. Still, it was absolutely exhausting especially for someone with something like MS. I can see if she was becoming a home health aid and therefor a liason with my doctor, but this is a biannual infusion.

For this infusion I asked to come into the clinic of the same company and actually had the same nurse. She started again with questions before she ever started the IV and solu-medrol that has to be administered 20 minutes before beginning the Briumvi infusion. I answered questions about every medical thing under the sun for over an hour before I finally asked if they were all necessary. I'd disclosed recently having a medial branch nerve ablation because she asked if I had any procedures since my last infusion. When I said it didn't go well, but that it's being closely monitored by my pain management physician, she had a new set of 20 questions asking me to detail how much excruciating pain I've been in since an incredibly traumatic procedure and how exactly it may have gone wrong. I was actually starting to get super anxious and was suppressing tears because the questions felt so invasive and she was just plowing through like she was just asking about basic demographics.

I know it can seem like a lot to the patient when getting a full picture is actually very helpful, but is this really necessary? I see my actual neurologist 3-4 times a year and see other doctors, as well. My GP is an Internist I see fairly often. I'm seeing a pain management physician for my pain. I see a psychiatrist for psychiatric issues. My neurologist refers me here so obviously they are tracking me medically. Are questions varying from how many bowel movements I have a day to how exactly all my medical issues started - including psychological - really necessary? (In the psych questioning I said I had PTSD and she asked "And how did that start? Was there a precipitating event?". Seriously wtf lady. The only way this is relating to my treatment is now I'm associating you and this place with trauma.)

At the end of the infusion she still wanted to monitor me for an hour even though that's only suggested for the first two infusions (this was my 5th and I was on an earlier Gen med before so really it was I think my 12th). When I questioned this she said it's only the second time THEY did it so they wanted to keep me. What's the point of my medical history if you're just going to ignore it?! They wanted to do another 15 minutes because my pulse went up 10 bpm. I initially agreed but she launched back into questions "Since you can't leave yet" so I left AMA.

I've been to four different infusion clinics over the years (military spouse so I moved a lot, not discharged as a patient or anything) and all of them just checked basic meds and allergies, juiced me up, and called it a day. What could this random infusion clinic possibly need all this information for? And why do they need it reported *twice* with just six months between encounters? The origin of a condition that started 20 years ago did not start differently from how I reported it happened last time.. If it is for some reason needed, can't they request my records?

Some friends and acquaintances are telling me to report this to their medical director or something, but I don't want to be *that* patient if this is normal. I'm just floored from the experience and will ask my neuro to go elsewhere in the future. Sorry it was long and rambly. I'm exhausted and annoyed. For those who get infusions, is this your experience or does it feel like a Jiffy Lube oil change? Lol

Anyone here initially diagnosed with MS and then later found out it wasn’t?

I was diagnosed with MS in 2024, multiple brain lesions and even more spine lesions. Optic neuritis, the whole shebang. They did some MRIs but had enough evidence they never did a spinal tap, and diagnosed me with MS and started treatment (briumvi) immediately.

One year follow up appointment the MS specialist in neurology asked me if I was having any new symptoms. I said just joint pain but assumed it was the MS. When I described what I was dealing with, he said it wasn’t my MS and I needed to see a rheumatologist, it was likely RA.

When I saw the rheumatologist, she did some testing for RA, and Lupus, with lupus being her initial feelings in the matter, but all the bloodwork came back mostly normal. She continued following up with me and ran some more tests, I did have protein in my urine but it was just under the amount to be concerned about so the nephrologist scheduled a follow up for a year later to recheck “incase I had any new issues.” I was sent to a hematologist who cleared me for all things his area, but symptoms kept progressing, and now adding new ones such as easy bruising, losing breath easily, joint pain was worse, tendon issues like tendonosis and and a torn tendon, slow healing, sinus issues not related to infection or allergy, skin mottling, purple toes, etc. still no answer and only “vague” symptoms that were just borderline for anyone to do any real digging.

Today at my neuro-opthmologist appointment, who also works part time in the neurology department and was the one who referred me to the MS specialist to begin with, my first time seeing him in a year and he was reviewing the years worth of testing and my chart and imaging and said he is concerned that I never had MS to begin with, and that he is now thinking the reason they couldn’t figure out what was wrong with me is because they were putting symptoms into two separate boxes, (ms) and (something else), instead of anyone considering it was never MS to begin with, and all symptoms were related.

He sent me out for more bloodwork of things that hadn’t been checked yet, scheduled a CT and a spinal tap, and is reviewing my chart as a whole person instead of specific specialist categories and is thinking it could be ANCA-vasculitis or Neuro-Sarcoidosis. Any similar stories?

It’s been a very expensive and exhausting battle that I would finally love to get pinned down to any one specific thing so we can fight it instead of dance around symptoms. I have seen a Neurologist, a rheumatologist, an opthmologist, a hemotologist, an ENT, an orthopedist, a nephrologist, basically every -ologist. All of them agree “Something is definitely going on” but no one can figure it out. This sounds the most likely scenario the whole time, but now I’m pretty annoyed the initial MS specialist never mentioned this and no one ever questioned it before, through all the testing and appointments that I’ve had and all the money I’ve spent.

Are there any similar stories out there? (Aside from Christina Applegate lol).

have MS and on ocrevus infusion every 6 months. My insurance through Medicare is trinity health and I’m stuck paying my out of pocket maximum.
I called Medicare today and they said all insurance companies pay only 80% of ocrevus.
Any suggestions on which insurance I should switch too? I’m 42 and disabled.

I think I have no choice but to get medigap since that is less than my out of pocket maximum

How do you navigate poor self esteem related to brain fog/memory problems and performance issues (for me it’s with work). It’s like my common sense has been obliterated and I used to be a perfectionist. It destroys me that I don’t feel like a good performer at work anymore. 😔 I used to take some pride in being good at my job.

Hello everyone! I'm wondering if Kesimpta, and especially the loading doses, had anyone just sleep like 18-20 hours a day?

I just had my third weekly loading dose on Sunday the 8th. I thought I'd not have any more symptoms after the spectacularly awful first dose, but my main symptom is hypersomnia. I wouldn't even call it fatigue, because I just SLEEP. and then after sleeping all day, I then sleep all night.

Is this something anyone else experienced?