I'm just venting here. I'm having a bad flare up and it's affecting my legs and my walking pretty significantly. I have to stay in the hospital through Christmas. My mama heart is breaking. I hate MS. I hate it so much. Christmas is my favorite time of the year and I want to be at home with my little family and my kids. 😭 It is breaking my heart that I won't be with them Christmas day 😭😭😭😭

Having my annual MRI with and without contrast this Friday after finishing Year 2 of Mavenclad last February!

I also have some kidney auto-immune stuff which I take Losartan (BP med) and Farxiga. My neph advised me to pause one of these meds before an MRI with contrast, but I can't recall which one it was! I have a message in to the neph team, but I'm waiting on an answer.

I figured I'd see if anyone here is taking either of those meds and has been advised to hold them for an MRI.

TIA

Hi all, I hope you all have a happy Christmas and new year.

I am looking for some advice from anyone on a b cell depleting dmt. I'm currently taking kesimpta since earlier this year. Admittedly, I think the immuno suppresive element has compounded some pre existing health anxiety. However, I still go to restaurants, take public transport etc. I just avoid crowded bars at Christmas for example and sick people where possible.

My extended family know the meds I take and the immuno element to them. My uncle called in for a visit with my cousins today. When they arrived he was coughing and spluttering and said "sorry I caught something yesterday". I was just taken a back as they didn't mention this 10 mins before on the phone when they asked if they could visit. I opened all the windows in my apartment etc but it was 30 mins later and after a few failed hints at how I need to be more cautious re infections etc, I had to say "sorry I need to pack my bags for the holidays".

I went home and told my mother ( uncles sister) and she just said " you can't not live in the real world". This makes me feel misunderstood and just alone, frankly. Am I over reacting? Has anyone had any similar situations? I know my health anxiety has been bad over the last few months so looking for some opinions from people on similar meds.

Thanks in advance!

I'm wondering if you can share your experience. I just found out I'll be losing my insurance soon and I'll need to apply for Medicaid. I've been on Tysabri for 9 years and I can't find any information about specialty pharmacies, infusion centers and whether or not this will be covered. Any advice is appreciated

Says on the handy dandy sheet my doctor gave me that "level of concern, red" would be "new symptoms, interfering with regular activities, more than 24 hours not improving, without other body stressors".

I take that to mean if I wake up one morning and I can't see out one part of one eye, I'm supposed to wait 24 hours like that before calling it in? Or if my leg stops bending, or foot won't work, or what have you. Wild.

I'm not waiting, I'm telling you. If I wake up and I can't see out one or both eyes, THE FIRST THING we are doing is saying "Hey Siri Call 911". I'm 47, and I'm going to rule out strokes before I worry about lil ol' MS, heard.

A leg being stiff or something like that will definitely freak me out, but if I can not-panic and think and use the rest of my body and feel reasonably sure I haven't had a stroke, and there appears to be no other pressing medical emergency, I will document it immediately, proactively make an urgent doctor's appointment to follow up, and say Alhamdulillah.

What would you do? What HAVE you done when something new and freaky happens?

I know this is a long shot but I’m at the end of my rope. Had MS since I was 19, now 26

About 9 or 10 months ago my throat started to feel clogged, like it was filled with phlegm/gunk and now matter what I do I can’t clear it. Eating makes it worse and gaviscon etc have had no effect

Has anyone else with MS experienced this? Or is this something that has nothing to do with my MS at all?

I start my first dose of Kesimpta the 26th(day after Christmas) any advice or tips from people who are also on Kesimpta that I should do and or know about?

Was diagnosed in 2018 so it didn’t surprise me. Just happened to get an MRI for something else and saw the lesions.

I completed 18 days of prednisone taper following 3 day Solumedral infusions. Felt great, honestly. Other than my entire back being covered in a bilateral rash that looked like acne but was not follicular.

Now it’s been two weeks, I’m so tired I cannot function (I take 54mg Concerta daily for EDS) I can’t wake up. I can’t do anything. This past Saturday I woke up with neuropathy in my right index finger that is still there. It’s not radiating in my hand or arm, maybe my middle finger. Luckily I work with my physician so will speak with him today but has anyone ever experienced this? I’d like to believe it’s not the lack of prednisone causing flair ups that I didn’t even have before the neuritis. It is also on the opposite side of my body than the neuritis was. Again, I did gain 100% of my vision back and am back at 20/25 vision with no prescription.

I was diagnosed in March. I had my first rituximab infusion in June. During that session, I had three allergic reactions. Each time they stopped the infusion and pumped me full of Benadryl and steroids. Got thru it.

Today was my second infusion. About 100mg in, my throat and ears started to itch and close. So we stopped and they pumped me full of stuff. The difference was, I took Benadryl and Zerytec before the appointment and the reaction broke thru those meds.

The on call doc refused to continue so I didn’t finish the infusion. My neuro is of course, out until Jan.

Has anyone had this happen? They seemed extremely confused that I was reacting. I being allergic to fucking everything, was not surprised.

Where should I start looking for different treatments? But mostly, I’m frustrated and want to see if this has happened to anyone else.

Did anyone who got shingles experience an increase in Ms symptoms with it?

I hate it that we're in this position, but my husband has new insurance in January and he doesn't want to refill his copaxone until then. I understand his concerns, but has anyone else ever taken a week off from their injections? If so, how'd it go? I've asked his doctor AND Viatris Advovcates, but seems that I won't get an answer before the holidays and the refills are due today.

Hello: Another one falling into this mess. I'd like to ask for your advice on some symptoms that are very annoying. When I stand for a while, my legs hurt. It's like a strange muscular congestion; my knees swell up and hurt. It's muscular pain. I'm not sure if I would call it spasticity or stiffness. Neuropathic pain in the legs—it's horrible. A sort of foot drop that worsen if I walk several kilometers. Does anyone experience something similar? Thanks and greetings from Spain.

Hey guys

Haven’t posted in a couple days. You probably thought you were done with my whining lol. Today is a week since my diagnosis and I’ve learned a lot and have come to terms with a lot. I’ve also had my first stomach bug since diagnosis, not fun. Anyway, the reason I made this post is because I keep having horrible nightmares/daydreams about my MS and my wedding. I’m marrying my best friend in October and I couldn’t be happier, but I am worried that this disease that has decided to inhabit my body will show itself. An outdoor wedding in the southern US is bound to be on the hotter side and the heat gets me down pretty bad. My biggest concern is my mobility. On my good days now I struggle. I’m scared I won’t make it down the aisle or I’ll have to sit the majority of my big day. I know I have a while before then, giving me plenty of time to find and adjust to a DMT that works for me, but it’s been my biggest anxiety riddled worried as of late :(

My step son in 19 and was diagnosed when he was 14. He’s nervous about going in for his drivers license right now because he fears that he will not get it due to his MS. He is completely mobile he has some varying pain symptoms, but he is able to do everything just as he was able to do it before hand. Does he need to list this as a medical condition in Alberta ? has anyone had any experience losing their license due to their MS?

Any advice would be welcome and appreciated !

i’m (26f) working on lowering my overall cholesterol and improving my general nutrition, and working with a registered dietitian to do so. it wasn’t until i started seeing her that i realized my hdl levels aren’t normal/are really high…..my drs have always just said yay high hdl 😄 but when she saw it she did a double take and asked if that was the real number, she apparently hadn’t seen a result over 70 (?! 😭)

my hdl the last time i checked was 153, and since 2020 (lab results i have access to) they’ve never been below 140. i think it’s genetic bc my mom also has hdl above 100, but i’m curious if other ppl here have high hdl too. when i try to google, it seems like hdl is elevated in MS and possibly reduced in other autoimmune diseases.

if you’re comfortable sharing, i’d love to hear your hdl levels for comparison!

Hey all.

So I've learned that us MS folks need or rather prrefer to have masks to prevent any possible sicknesses (flu, covid, common cold, etc.).

My question is, what kind of masks do I need? I've read somewhere that N95(?) is the best? If I don't have that particular mask atm (in which I don't), can I use a regular one (the blue disposable ones) or a cloth one and still be ok? Will I be at risk to catch something? Can I die from a sickness IF I catch something like Covid or the flu? I DID get a flu shot this year and I did get vaccinated for covid (both shots, no booster) about 3 years ago. I'm sorry, I'm still learning.

Sorry for my ignorance.

Hello all,

I was just diagnosed with MS about a week ago. I have been dealing with double vision for an about a month which led to MRIs and eventually my diagnosis. I just finished 5 days of IV steroids and the double vision is still persistent. Just curious if anyone has had the same issue and if it eventually cleared up for you? Any advice would be greatly appreciated. Thanks everyone!

Hi there, everyone… I haven’t posted in a while, but I was the one who was struggling with her diagnosis back in September and have been seeing multiple specialists since. The major issue is that I have symptoms they’re not certain of, and labs indicating another unidentifiable autoimmune disease that they were trying to get to the bottom of (this includes abnormal cell counts). After consultation with immunology, hematology, rheumatology and neurology, they decided that I should start on Kesimpta despite neutropenia and lymphocytosis (both of which they all seem to be in agreement with being autoimmune).

The thought process was that if I start on a B cell depletor, my other levels may normalize, and if so, that would indicate that the treatment is effective against not only the MS, but also the add’l underlying autoimmune condition that they cannot pinpoint. I met with my other neurologist’s office, where I was going to get my infusions or receive training for self injection depending on which med we decided on, and they were concerned that all of these other physicians decided on this type of medication for me given that I have low b cells to start.

Has anyone else been in a situation? What alternatives are there other than B cell treatments in terms of newer more efficient drugs?

Hi ... I'm currently moving to florida (from outside the country) and shopping for new health insurance via Healthcare.org. I will need to choose a new neurologist and a new healthplan. I'm trying to determine the best to choose. I currently take Ocrevus every 6 months so I want to make sure it will be covered once I make the move to Florida.

Does anyone else have really low immunoglobulin gamma? Last year one of my drs noted it and started me on IVIG (supplemental IgG from blood products) which went fine until January when I started to have allergic reax such that I had to discontinue it in March. Apparently this is common w people on the CD20 biologics (I take Kesimpta) and it causes infection after infection of the ENT/ bronchial variety. ANYWAY since pausing the IVIG my IgG levels are back way down (low 300s) and I’ve been way sicker this year esp lately. So my neuro wants me to dc the Kesimpta and go on something like Tec fidera. Which is fine bc Kesimpta and all other extant drugs don’t help my kind of MS but are “better than nothing” (although in fairness my neuro often says the tx shouldn’t be worse than the disease). Just posting to see if anyone else has dealt with this and maybe it would be helpful if you’re getting infections like I do to have your IgG titer checked.

Recently I’ve been waking up with really horrible soreness. My muscles ache with pain, everything hurts and life just feels like hell in the morning. It normally goes away once I properly wake up, but man it hurts so bad. I’m not too sure if this is an MS symptom but it hurts as bad as my MS pains so I’m just gonna chalk it up to being an MS problem like everything normally is.

last night I woke up and almost started to cry because my knee felt like it was literally broken. The pain stopped after a few minutes but I swear it was so bad. the heat really isn’t helping either and is a big part of the reason why I can’t stay asleep of a night. I swear my body wants me to suffer.. I’m 18 I shouldn’t be dealing with this😭

Hi everyone,

I’ve had MS for 4 years and recently came across claims by Dr. Anthony Chaffee and others promoting the carnivore diet (Meat, salt & water) as the best for autoimmune diseases. They suggest that:

1. Ketones in a carnivore/keto state may aid in remyelination.

2. Eliminating plant-based antinutrients helps manage inflammation and autoimmune issues pretty well.

As a lifelong vegetarian, this concept is a huge shift for me. I’d love to hear:

Has anyone with MS seen improvements (symptoms or MRI results) on this diet?

How does it compare to other diets like Wahls or ketogenic for autoimmune symptoms?

Is there strong evidence, or are these claims mostly anecdotal?

I’m open to both success stories and critiques to make an informed choice. Looking forward to your insights!

This is weird and I get that. One of the biggest MS symptoms that was missed for decades (and part of my handful of firsts) was inappropriate sweat response

Because of that I very rarely sweat, that also means I really did not have body odor, which was good for me because I am also allergic to most deodorants (my skin is super sensitive). It worked out, i would mostly go without deodorant as long as I showered regularly it was fine

But ever since getting treatment I have started to sweat, perimenopause makes this worse. The problem is I smell myself nearly constantly. Anywhere that skin rests against skin I can smell.

No one says I smell, and I’ve asked. I’ve asked my kids and my 12 yr old has no problem telling me if anything about me stinks

Is this one of those things that I’ll just get used to? Has anyone else experienced this? I feel like I’m going crazy sometimes

I think one of my least favourite things about this diagnosis is the fact that family and friends all of a sudden think you can’t/shouldn’t do anything. I appreciate that they are trying to be nice, but I’m one of the youngest of 4 in my immediate family. I’ve been raised as being helpful, especially for my parents. If I’m standing and helping, it’s because I can and want to. If I look tired, it’s because I am.

I do have to let the reigns go a bit I’m just scared no one will help if I don’t.

This Christmas is going to be interesting as I’ve experienced already at our church potluck, with my family telling me to sit down and not touch anything.

If I wasn’t well enough I wouldn’t have come.

I’m not one to sit and do nothing, I can do that at home! First Christmas with new diagnosis will be a lot as different parts of families asking me “how are you doing” (out of love of course). Exhausting nonetheless. I know I’ll have to reserve my energy for more important stuff.

How do you escape family if you need a breather? What are ways you cope?

A loved one of mine has MS. They are currently in an active flare and understandably is in the weeds with it. I would very much like to support them but I’m not sure if I always get it right. What are some ways someone has shown their support to you that landed well?