Hi I'm researching different afos and though there might be shoes specifically made to counter the foot drop/scuffing, I'm at the point where now the top of my big toe gets scuffed on my shoe and I kinda would like to play sport or run without the imminent fear of death, has anyone found something that really works for them?

Hello, I was just diagnosed with ms today. Any advice? My hands and feet just went numb one day and since then I’ve lost some mobility in my hands tight muscles around the body. It’s not so bad? Anybody been on kesimpta? Anyone try bpc157? I’m trying to keep as positive as can be.

I love my neurologist so much! She just called me from home and talked to me for 10 minutes 💓 (I live in central US and she called at 19:30.)

However, she did diagnose me with PPMS. So, there's that

Just came from the MS clinic today and met my new neurologist. Diagnosed last week. I'm feeling so much better about my diagnosis. I was told with my age (44), being female, white and having only sensory symptoms my prognosis is good. She said my MS is mild so far and if we start meds right away she expects it to stay that way for a very long time. I have chosen Kesimpta and paperwork has begun to start that. After bloodwork, vaccinations get updated and insurance/government assistance get approved I will be set. Should be about a month or so. If it takes longer then we will contact Kesimpta Go Program and hopefully they will help get me started sooner while we wait. The Dr and nurses were amazing. Such a huge relief. I might get a good sleep tonight finally

Today I was in my sit-to-stand lift (at home) while my fiancée was dressing my hospital bed.

I felt severe leg spasms coming on, so I yelled for my fiancée to come adjust my feet in the lift (I have experience with this, as I nearly slipped out of one in the hospital due to aide stupidity/incompetence).

Immediately after the spasms, I felt lightheaded and ended up passing out for a minute or two. My fiancée had to put her arms under mine to keep me from crashing to the floor, out of the lift.

Has anybody else experienced this.

Hi all! Should I take my Tylenol before my kesimpta dose or after I do the first shot? Or same time?

I am so curious to know how long you all have had MS! And also, do you count from when you had first symptoms or official diagnosis?

I've had an official diagnosis for 7 years but first symptoms were 18 years ago!

Anyone have advice for what to expect with IvIG? I had my 1st infusion last week and am still tired and achey & feel pretty stiff (not painful and not immobile) in my neck. Is it because this was my 1st dose or what I should expect going forward? I Super Hydrated before and after but this will be very inconvenient after my next scheduled dose since a week later I'll be visiting my daughter in Australia (I'm in NYC area). Just need to know what I'm dealing with here.

So I’m new to this (first big flare was earlier this month) and it’s ALL I can think about. How long did it take for the disease to move to the periphery of your mind? I know it’s a daily struggle for many but please reassure me I won’t wake up every day for the rest of my life with MS being my first thought and my last thought every night when I go to sleep. It’s driving me nuts. How did you overcome this feeling?

It doesn’t help that I had complications with the LP that led to a leak and blood patch and now that recovery sucks on top of the steroid taper withdrawal I just feel like my body is not mine. Anyway I guess I just need encouragement that I won’t always feel awful and be obsessed with thinking about this condition.

This week I finally met with my neurologist, who does specialize in MS, and he basically told me that heat, stress, and too much alcohol can cause prior flares to show up again. I pretty much knew all of this and had come to terms with it. I met with my ophthalmologist, who proceeded to tell me that my optic neuritis (this was the symptom that caused me to get tested for MS in October) had damaged my nerve and if my meds do not control my MS I could lose my sight. What I am confused by is the fact that when I went to my initial follow up a week after diagnosis, they did not see any damage to my nerve, yet now they do. I had food poisoning in December which caused a slight slide in my vision for about 24 hours then it came back. However the eye doc is claiming that most likely what caused the damage, even though the optic neuritis only lasted 24 hours this time, vs 4 weeks the previous time. The eye doc is also claiming that once I am on the right medication there shouldn't be any significant changes to my eyes. My MS doc is telling me that the flares can still happen even on meds, which again seems to be consistent with everything I have researched. So I'm confused as to what the eye doc is saying, if something as simple as food poisoning can cause the flare to come back, then how in the world could my MS meds prevent that since it is a relapse due to illness/stress? Sorry for the bit of a rant but I don't even know what to think with this.

TLDR; My eye doc says a 24-hour optic neuritis relapse (from food poisoning) means my MS meds aren't working if there is new optic nerve damage. I'm confused because my MS doc and research suggest flares can still happen on meds.

Anyone else mourn their old life? Just got a rush of sadness today for the first time. Sad this time next year I might not be able to walk

I've been on it three straight years for what I don't know. But I just want to ask is there anybody that's on it and has clumsiness . I am on 80 mg a day but my day is a full day and then throughout the morning cuz I don't sleep. I don't know if it's the MS or it's the medication

Hi guys I’m 28 (f) diagnosed August 2024. Since my official diagnosis I have been taking kesimpta which has been working well for me. I do have a weird symptom where my bones really ache especially in my arms and legs. It feels like the growing pains I had as a child growing up. I do not know how else to describe it but it’s painful and annoying.

https://www.newyorker.com/cartoon/a60977

Am I the only one who thought of my MRI when I saw this cartoon?

Hi, I got diagnosed with MS last November , and I'm looking for a great MS specialist( specifically NYC area , or Boston,MA). Any recommendations?

I have a community question, I am 42 (be 43 my birthday) and I have such a hard time getting around for long distances that my Dr. has recommended a dreaded electric chair, of course the lightweight foldable ones are mostly used by wealthy seniors, expensive and not likely covered by insurance. During my search for a used one, I came across the Caroma P5.

I am working on reaching the company however, I think with a seat upgrade, speed control addition (indoor/outdoor) and a Third wheel added to the rear to make it a trike (as we usually have balance issues) This could be a more affordable option for us... and well... more Fun!

So who would be interested in purchasing these (just wanted to check interest) instead of a dreaded wheelchair? Staying active and retaining independence is Important for us to keep going and I think this could be a great option.

Also, if anyone here is a mech engineer (I'm a computer engineer) and can plan out a modification for these, I think it would be a great venture. (remember if you steal my ideas, the internet is forever! lol)

Hey y’all, I’ve seen a couple of posts on here addressing concerns about all the things the current administration is taking away.

Can someone please explain to me what’s going on?

How does this affect us? What is the GOP doing thats causing it? Is ADA safe for now? Will my fiancés insurance deny me for having a preexisting condition in March? Whats going to happen to Kesimpta in terms of accessibility? I dont currently pay anything for my Kesimpta and I can’t afford another medication.

Im honestly stressing about all of this and I feel like my head is spinning. I’ve been really struggling with feeling like a burden and costing more than I’m worth. If someone could please explain what’s going on I’d appreciate it. I’m so stressed I’m struggling to concentrate on news articles long enough to take in what its saying.

Btw any hateful comments will be deleted.

Hi! I (33 f) was just recently diagnosed with ms that was caught completely by mistake after getting an MRI for migraines. I just had my first half dose of Ocrevus yesterday and I can’t put into words how I’m feeling.

A bit achy? Headache that was taken care of with ibuprofen. I feel like I have no energy but also like I’m vibrating from the inside out?

Since I am technically symptom free, I don’t know what to expect. I just feel very…weird 😅

I have narcolepsy with Cataplexy (diagnosed at 17), so this is my second autoimmune/neurological disorder.

I would love to hear if anyone else has a better way to put into words how you felt after the first treatment!

I finally get to start my DMT tonight and I’m so thankful. It’ll be my first kesimpta dose. Any tips? I am hopeful 🙏

Check out my new sub where eople can share various disability hacks that they have found to make life easier. Some really easy ones that I have found are simple like wearing a fanny pack and being able to hold lots of stuff while I'm sitting. Using puppy pads instead of expensive incontinence pads on my wheelchair or bed. Various items for dogs I have found like cooling vests or towels.

Any kind interesting gadgets or repurposed things to help around the house or out and about. Think about joining if you want.

r/DisabilityHacks

Today my professor asked me if I was a from Poland based on my "accent" and difficulties finding words, so I just told her that I'm not 😑 this isn't the first time I've been asked things like that. Like do I just tell them oh it's not an accent, actually it's MS?

I am in the process of switching from Teriflunomide to Capoxone and the hospital wants me to do an 11 day flush with Colestyramine. Has anyone else had to do this, and other than gastro issues is there anything to look out for as I will be working whilst undergoing the flush out.

My legs felt numb, I was dropping things and I think I was speaking/responding slowly. I keep spacing out and people keep asking me if I’m ok. I’m crying more than usual and feeling more anxious. I’ve been experiencing more fatigue. My back hurts worse than usual.

How can I tell if this is a relapse versus other symptoms that I can explain off? Or is this all in my head? lol

Hello.
I'm looking for a Neurologist - NHS or Private - who doesn't believe in the "escalation method" and will actually treat me.

So far, I've had 2 neurologists prescribe me Naproxen and Tramadol for years and now my 3rd Neurologist is saying that he doesn't prescribe anything for PPMS as it "isn't bad enough to prescribe anything."
He also cancelled my Naproxen and Tramadol immediately, causing me to come off 6 years of use cold turkey.

I've found Aaron Boster MD in Ohio on Youtube and I've found that his methodology and outlook on treating MS is something I very much agree with - Treat as much as possible as soon as possible to prevent anything developing instead of waiting for more damage to occur before moving up to the next medicine.

Does anyone have any recommendations of similar Neurologists based in the UK?

Hi all, 25M here from Australia, was diagnosed with RRMS at the start of this month, starting Ocrevus in a couple of weeks.

My first symptoms were in March 2024, which was vertigo and balance issues until May.I then recovered fully from that but had pins and needles in both feet from May-June, as well as some urinary urgency. then came leg weakness, pins and needles in both legs and very mild spasms in legs and neck june-october. Symptoms died down until December where pins and needles have gotten worse. After getting steroid treatment 2 weeks ago my symptoms have gotten worse instead of better, with now pins and needles being frequent and more intense, and now spread to my arms, spasms are still mild but becoming more frequent recently too. Urinary urgency has also returned somewhat.

I'm happy to be starting my DMT soon but I'm scared at how quickly I am developing new symptoms (and maybe lesions?) from googling this seems to be a very very fast rate of worsening so early on, with most people (seemingly) only getting new attacks once every few years, not multiple new symptoms within one year.

Any advice/ encouragement would be great!!

I’m meeting with a high risk MFM this Monday as my husband and I want to start family planning.

Do any of you have any recommendations on questions I should ask / different medications I should bring up when I’m pregnant? I take Ocrevus as my DMT.

Thanks so much!

Hey friends, I’ve been not feeling great for what feels like too long of a time. I started getting sick around December 22nd and went to urgent care on December 27th and was prescribed a zpak. I had a wet/mucousy cough and my classic symptoms of a sinus infection.

1.5 weeks later and I still wasn’t feeing good and coughing up pleghm/mucus so I went back to the dr and was prescribed a 10 day doxycycline for bronchitis. I still had the cough but in all other ways I felt better, just the nagging cough.

I got my Ocrevus infusion on Jan 24th and now I still have my cough but its super persistent and rough. For the most part it’s dry and wheezy but I am still coughing up pleghm and mucus (especially in the morning) and I have a bit of congestion (blowing my nose more often that I’d like to)

I just had to get new health insurance and its extremely expensive to go to the dr/urgent care so I’m wondering if my cough is worse only because of the infusion/autoimmune response. Will it go away after some time? I read that coughs can last up to 4-8 weeks but I also don’t want to damage my lungs lol.

Thank you!!

People I haven't talked to in YEARS are randomly messaging me this and it's getting to the point where how is that helpful?? How is that ok? How could anyone think that's a nice thing to say? To anyone?

Hi all,

Girlfriend is waiting to start Briumvi. The pharmacy says they are waiting to get a prior authorization from my doctor. We met with the doctor on January 2nd. This feels like it's taking too long. Is this normal?

We are not in love with this neurologist because they are poor communicators, but we are nervous to switch to a new neurologist before she does her first Briumvi doses, because we don't want to push off the start date even more. We don't even know how we would go about switching neurologists.

We are getting nervous because first MS symptoms appeared in September 2023, but diagnosis was not confirmed until December 2024, so we are keen to get things moving ASAP.

Any advice on how long it should take to get the treatment, as well as any advice on switching neurologists would be very helpful.

Hey everyone, I've been in this community for a bit now, finally received a formal MS diagnosis yesterday after having ON in 2022 and a new C3 spinal lesion and am going to start on Kesimpta. I am also a type 1 diabetic.

1. I have seen a person or two comment about having MS and diabetes - largely it sounds like treatment doesn't have much of an effect on blood sugars or diabetes management. I wanted to hear from folks who have experience with MS and diabetes and what challenges have presented themselves during the course of your MS journey?
2. With the uncertainty of the new Trump admin, I am worried there might be some future roadblock to getting access to this medication, and if I am on it and have to pause what will that do to me? Based on my light research up to this point, it seems that while on Kesimpta things are great, but if you have to come off of it that is when things can quickly go downhill.
3. Are there any other issues folks with other autoimmune conditions have had while taking Kesimpta?

Thanks in advance!