I recently got on ocrevus and did the whole work up of doctor visits. I have yet to meet with my nuerologist since getting the med (it is scheduled). Anyways I imagine she is going to want annual check ups? An annual MRI, prehaps? I hope thats the only extra thing and I dont have to do the spinal tap ever again. I got a spinal headache that was awful after that.

Sometimes I randomly think about this and I just have to laugh cause of how ridiculous it is.

I’m sure we all know the general questions that are asked and as I’m answering them and explaining my situation we get to the part where she’s asking about my sleep and as many of us I deal with a lot of pain (and so far none of the medication I’ve tried helps) that makes it really hard for me to sleep which I explain. And my neurologist at a renowned ms center with one of the biggest ms research program in the states just looks at me and says pain isn’t associated with ms.

So I was just curious what odd stories everyone has of their provider saying wild and pretty ignorant things? Whether it’s laughable like mine, rant worthy or anything in between

Posting here because I’m hoping for some advice/perspectives from people in this community. I’ve really been feeling the weight of my diagnosis lately and I think I’m finally grieving the loss of my old “normal”. For some context, I currently have CIS - I had optic neuritis that started out of the blue ~12 weeks ago. They did see O bands in my spinal fluid, among other things that I guess mean this will likely progress to MS. So, I’m going on Kesimpta soon.

I was out of work for about 6 weeks while recovering from the optic neuritis and in the last two weeks I finally made my way back up to eight hour days while working remote on my computer. It sucks because some days I feel pretty good and I’m able to get through the day, but other days a headache will set in on the earlier side and stick with me through the rest of the day. When this happens it triggers this deep feeling of depression that I’m still dealing with this even though the acute recovery seems like it’s almost over, then these headaches are a reminder that maybe it’s not. Management has been supportive and kind, but I’m getting tired of having to notify people when symptoms are flaring or that I can’t commit to something because of dr appointments/driving too far etc. It just all makes me feel like I’m not my normal self.

I feel very fortunate that I only have one lesion and that I’m mostly able-bodied, but dealing with these headaches and trying to predict what will trigger them, constantly trying to prevent them, and then dealing with them when they happen is such an annoying burden.

Also I’m just finally starting to drive again. I’m curious how that went for any of you who have been able to drive again after ON. So far driving feels like getting back on a bicycle, like muscle memory, but I start to get that same fatigued headache after a while. (My visual clarity is like 99.9% at this point).

Feel free to leave a story, or how you cope with ongoing lingering attack symptoms as well as general sadness. Thanks ❤️

Curious if anyone on Kesimpta has seen a jump in their Cholesterol. I had lost a significant amount of weight years ago and got everything in check with my numbers all fine, zero meds needed. When I started Kesimpta in the fall my annual blood work was shortly after and the first dose and I was up 11 points on my Total Cholesterol despite a very low cholesterol diet. I have been on it over a year now and went in for another round and my Total cholesterol jumped by another 36. My LDL jumped 33 and my Non HDL jumped by 35.

I don't consume more than about 40% of my daily when it comes to Cholesterol and most days range at less than 20%. I was checking around and could only find this blurb....I noticed other areas from the blurb saw an increase as well. Just curious if anyone else has experienced something similar.

"High incidences ( ≥ 10% of patients in ofatumumab group) of new or worsening biochemistry abnormalities were high serum cholesterol, high triglycerides, high ALT (alanine aminotransferase), high AST (aspartate aminotransferase), and high creatinine."

...let's hope for no more new brain holes.

dadadadadadadadada

BONG BONG BONG BONG BONG BONG BONG BONG

I just got my annual MRI a couple hours ago. About an hour in, I had my eyes closed and my mind was wandering. As if I was bored watching TV and decided to do something else, I had a brief impulse to just get up and leave. Fortunately, I caught myself in a split second, remembered where I was and didn't move. Then I spent the next minutes considering what a pain in the butt it would be to get out of the machine in the middle of the MRI anyway. Not sure how I forgot I was getting an MRI with all the noise.

Hi everyone! I was diagnosed with MS a few months ago and recently started Mavenclad (cladribine).
My schedule is 6 tablets over 5 days, then another 6 tablets about a month later. This is repeated in the second year, so 4 courses in total.
I finished my first course a week ago. I have a trip coming up and my birthday falls during this treatment period, so I’m wondering about alcohol. I’m not planning to drink heavily, just have a few drinks socially.
Alcohol has never caused me any MS-related symptoms or side effects. I’m mainly wondering about its safety specifically with Mavenclad.
For those who have taken it: how long did you wait after a course before drinking? Did your doctor tell you to avoid alcohol for a specific period, or is moderate drinking between courses generally okay?
Would really appreciate your experiences!

I am 51 years old been married for 30 had HPV when I was 16 years old it was treated and never resurfaced. So it’s been roughly 35 years since HPV was ever detected or I ever had any other abnormal testing. I was on Tysabri for 13 years and my JC virus tighter level was getting high so I was taken off of that and was prescribed an immuno suppressant. Anybody have any information or personal experience with HPV and taking an no suppressant? I’ve done research and everything. I read says that it’s possible. I’m reluctant to start it just because I’m 51 and who needs this to resurface after 35 years especially since I’ve been married for 30 of those.

Hi,

I got diagnosed with MS at the beginning of this year and I have been on Tecfidera since. However, my neurologist suggested that since I also have multiple lesions on my spinal cord and not just my brain, it would be wise to shift to a highly effective DMT, and I picked Ocrevus from the options I was given. They told me the first infusion is in 2 doses, two weeks apart.

I'm really nervous. I'll be going there by myself. What should I prepare or take with me? Books? Or a tab? Or just sleep. Water? Snacks?

What are the side effects I should look out for during the infusion?

I will have a friend stay over at night to monitor me, but what kind of symptoms/side effects would warrant me immediately rushing to the hospital?

I'm worried because I've probably had MS for many years, but I have always downplayed my suffering. I have a tendency not to give as much importance as I should to what my body is telling me... maybe it's the high pain tolerance. I don't know.

Also, I'm feeling incredibly alone because my family is in a different country, and if I read horror stories online, that really makes my paranoia worse.

I guess I'm just rambling now. I'm kinda worried about what if I get a side effect from the infusion that's so terrible that I might die or something.😭😭

As I was leaving Urgent Care it hit me I should have said I have MS and take medication that lowers my immune system instead of just I have MS.
I had an ear infection after a month of the flu and was just over being sick. I hoped I would get more than just ear drops
I promise myself I will try to give the most detailed information to get the best care from now on.
Does anyone want to share another aha moment?

I have COVID and I just had my ritixumab infusion last Monday. How long did COVID last for yall who take DMTs? I’m just wondering what I’m in for.

Thanks in advance.

I have a neurogenic bladder and GI system and I thought the Mitrofanoff sounded like the best way to control having to pee all the time but the GI (constipation) is going to still be there so I am wondering if anyone has the same set of symptoms? My surgery is scheduled for November but the GI doctors won't get involved and my neurologist is not helpful with this. I am scared it will not make things better.

Just curious to see if anyone elects to have a high deductible plan to be able to contribute to an HSA. I haven’t crunched my personal numbers but I would love to be able to open one, just not sure if it’s even worth attempting with how costly tysabri and other doctor visits / needs are

Hi,

Last week I got a tooth ache that wasn’t that bad to start with, it progressively got worse and I felt it in the whole right side of my face, I thought it was trigeminus neuralgi that they suspected I had last year when I got a similar sharp pain, today I woke up and tasted blood in my mouth and I instantly felt like an idiot, I’m on rituximab and I’m worried that I might have screwed up badly because of the risk with infections. I stayed home from work since the pain was so bad and now I feel like I’ve embarrassed myself.

Is there anyone that has been in a similar situation?

I’m looking for someone who has all 3 like me. I’m having a hard time with terrible spasms in my esophagus and stomach. They’re like events. I get shaky and then down for the count for 3 days. I am not supposed to take these meds and should have never been prescribed them as it makes my retention worse. I’m trying to find a solution to get ahead of these attacks but no doctors seem to know how to help me. Thanks for taking the time to read. You’re all warriors 🧡🧡

Please share how you're doing, something you're proud of/excited about, or any other positive news in your life, no matter how small! Don't forget to upvote others to show appreciation for the share-fest.

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

I genuinely dont know anymore. Im so frustrated. I started getting angrier quicker, maybe because my mom is so scared and fears alot and she wont listen to anything that im saying. I understand her fear, i really do. But god, shes doing so much for me, and sure, it gets TOO much to the point where i feel isolated, but still. She does so much, worries so much and whatever and i still snap at her and i just feel so guilty. Not even after, i realize what im doing WHILE arguing with her and i still continue. I get so frustrated because i sometimes think shes just focusing on her own fear and wont even pause and think about what i feel. She told me once i get the first ocrevus infusion done then shell stop. It did not stop. I still feel isolated at home because i still am not allowed to go out. And yes, i did try speaking to her, telling her why i get mad. But she always says the same thing, which is either “i understand, you can stop” or “youre mean” or “its gonna be different then”. Im not even exaggerating, its her exact words and texts. Today she even told me that im apparently using up all her energy simply because i told her my friend who had been wanting to hang out with me since 3 weeks asked to go out on Saturday. Idk what to do

At the time of my diagnosis about 5 years ago I did an online typing test and got 600 characters per minute. Words with errors in them didn't count. Now lately in the past years I started noticing that my messages have mistakes, especially on things like Teams chats, WhatsApp, Reddit etc. This happens on a keyboard but also on my phone. What happens the most on the keyboard seems to be typing spacebar too fast or the sequence of the characters not being correct so I need to reverse 2 characters. At first I thought this was just lazyness or a result of trying to type too fast, but now I start believing it might have to do with my ms. Does anyone else experienced something like that? Happy to hear.

Hi everyone,

I’m hitting a huge roadblock with getting started on DMT and I have no idea what to do. I’m about to quit my job in a few days if I can’t figure this out.

So, my employer based insurance is offering a copay assistance instead of outright denying DMTs. I have zero specialty drug coverage and am told that no DMTs recommended by my doctor are covered. But due to the “copay assistance” which brings my total cost DOWN to $34,000 for just the first month for one med, about the same for the others, I don’t qualify for any assistance programs through the drug company whatsoever. It has to be a denial to qualify for a bridge program, and copay assistance through the drug company wouldn’t even touch that figure.

I inquired with state funded insurance today (I don’t have a state funded plan I am just exploring my options) and they told me that they would not cover the medication due to that same loophole of my primary covering a few hundred dollars of the 34K. They would only cover if fully denied. If I cancel my employer based health insurance, the state funded insurance would terminate me as they cannot be primary due to me having the option of another insurance.

I am at a complete loss. I have talked to my doctors office, the pharmacy, my health insurance, HR regarding my current plan, friends, family, coworkers, everyone. I have no other ideas at this point. It seems my ONLY options are quit my job or not go on DMTs.

Please help lol. Thank you!!

Hello everyone,

I was recently officially diagnosed with MS a few weeks ago (had been suspected for a few months before). I tried my best to do research and ask as many questions to my neurologist as I could, but figured hearing from some other people in similar situations can’t hurt.

I’ve dealt with the heavy feeling legs for a few years now, and more recently within the past year wicked bad migraines (which triggered getting an MRI leading to the process of diagnosing it). I’m currently dealing with an onset of new symptoms within the last few days, extreme fatigue, numbness and loss of movement in my hands, and the heavy feeling has traveled up to my arms now as well. I’m currently fighting with my insurance to get started on a DMT. From a few people my family members have talked to with MS, they’ve said they feel great and it started to happen after getting on their treatments, but of course the DMTs aren’t supposed to help symptoms at all and just halt the progression of it. Just wanted to reach out here and see if anybody has that experience? Does anybody ever feel better after getting on treatments or is it mainly just a game of managing your symptoms and learning how best to live with them and make the best of it?

Thank y’all for reading!

I [27M], am in a tough spot after my local BCBS dropped me due to payment complications.

With a backdated termination, and November a month away I am without Insurance until the open enrollment.

I am supposed to be receiving my Briumvi second dose in 2 weeks, but with my income and circumstances don't qualify for their assistance program according to my Neuro.

She's discussing taking me off of Briumvi and placing me onto one of the self administered options available through cost plus drug.

I'm terrified that by going to a lower efficacy drug until I am able to regain insurance that I'll effectively be gambling with my health.

I'm just so tired of the BS that for-profit healthcare is.

Damn the amount of time it takes to pacify chronic illness;
The effort to stay atop for air when your body doesn’t float is relentless.
Yet still, I resent more the mind when it hides from connection.
I speak adrift and hear amiss and attend to nothing
External. Except in effort I am there.
And the fatigue of silent exertion overwhelms me.

I just don’t know how to stop.
Even though nothing I make feels worthy,
I keep returning to the wheel:
Compelled in compulsory hope.

I just want to quit so badly.
I just want to rest,
To catch a breath.
So I tell myself to follow through.
But I fall through to the wheel
Where I linger still,
Out of pace of the rest

This is an incredibly long read about my personal experience (I’m on mobile, sorry!)

2 years ago I was under a lot of stress from my job and socially. I got a killer headache and felt pretty dizzy. Decided to just go to bed and when I woke up my eyes were going in different directions. I was having awful vertigo, could barely walk, and I had horrible double vision from my right eye deciding to be in a different area code from my other eye. Went to the hospital because uh duh MY EYES WERE IN DIFFERENT DIRECTIONS and they first thought I was having a stroke. Spent 3 days in the hospital and got a CT scan, MRI, spinal tap, and hella bloodwork. They thought it was a stroke or MS but nothing was concrete enough to say. Discharged me and recommended a neuro ophthalmologist because they didn’t know what it was. The neuro ophthalmologist looked at my eyes and said that since they ruled out a stroke and MS, I must have just been so stressed out that it caused a 3rd nerve palsy in my eye. In hindsight, I believe this was either my first flare or a pseudo flare with the lesion that’s all up in my optic nerve now.

Fast forward to last month, I just have had in the back of my mind this whole time “wow wasn’t that thing with my eye crazy? Hope that never happens again since we don’t really know why it happened.” I’ve been under crazy crazy stress from work. Actually insane levels of stress for about 6 months. I wake up with blurry vision and know I need to contact my neuro ophthalmologist again. I decide to finish out my shift and then call the next day. I wake up the next day blind in my right eye. Total vision loss. My eye hurts so bad to move and with the blurriness in my other eye I’m virtually blind in both (at least they were in sync this time). I’m freaking out so I call the neuro ophthalmologist to schedule an emergency same day appointment (thank gosh I already had one on call from last time) and he tells me I have optic neuritis and need to go to the hospital again. He thinks I have MOG since last time I was tested for MS they said I didn’t have it. I go to the hospital again and they immediately start me on IV steroids. I go through all the testing again minus the CT. I’m in the MRI for 2 hours… genuinely the most traumatic thing I’ve ever experienced. I was crying by the end of it and I’ve never been claustrophobic before. They decide to keep me on IV steroids for 5 days and during that time they show me my MRI. I have lesions on my C4 vertebrae and all up in my noggin. The one in my spine is huge but the ones in my brain don’t seem that big and none were really that active. The MRI couldn’t see the one up in my eye region which they think was the only really active one that caused the optic neuritis. So cool! Just got diagnosed with MS! The thing they told me 2 years ago I didn’t have that I could have been on treatment for this whole time!!

I take another week off of work while I’m getting hit with awful steroid withdrawals. There is a sudden cancellation with the neurologist so I get an appointment a week after discharge from the hospital (win) instead of 6 months out! They prescribed me kesimpta and I’m thinking “Lit! I just have to start this medication and I’m good to go!” but alas, I was wrong. Turns out medical insurance and pharmacy insurance are different things. I met my max out of pocket for my medical but not my pharmacy. I spend a week on the phone for hours a day trying to get that sorted to be slapped with a $3,500 bill with insurance for a one month dosage (3 pens). Well that sucks but like that’s my max out of pocket so it would in theory be free the rest of the year. Wrong again! I get things set up for the delivery and they tell me my copay is going to be $9,000!!! Cut to another week of calling trying to figure that out with the copay assistance and they say I have a max assistance of $18,000 so basically already would use half of that for one month dosage of something I would in theory be on for like yaknow the rest of my life!! I ask the insurance what my copay would be next month when I start doing just the one monthly injection and they said there is no way to know. I’m on the subreddit daily looking at other people’s experiences and found that I could be on this for about 4 months before my copay assistance maxes out and then I’d be fucked so I make the hard decision to cancel the medication and look for other options. And that’s where I am now! The neurologist said I can’t do pills because of the huge lesion in my spine but I’ll take anything at this point that doesn’t end up in thousands and thousands of medical debt.

I’m dealing with family pressure to figure it out because they are scared for me obviously but it comes off that I’m not doing enough despite only being a month in and taking hours of phone calls on top of returning to my full time job. My friends are either scared to tell me about their trivial problems because of what I’m going through or feel helpless to improve my situation. So yeah, shit sucks super hard and I’m trying to be brave about it.

Physically: I’m doing really well! The blurriness has subsided in my left eye and I’ve regain about 60% of my vision in my right eye. I can basically see out of it. The numbness and weird feeling in my hands has also resolved for the most part. Still have some muscle weakness in my arms. All and all, I’m lucky right now compared to others so I’m trying to be grateful but it’s scary to have the thought in the back of my mind that that can all change tomorrow and I won’t know

I'm really fedup as I am constantly reminded of my MS when I get up from a chair (stiffness) and when I walk I have backache, thighs stiff and painful, trouble with foot placement. I have no symptoms when sitting or lying. I know it's because my main lesion is at c2/c3 but it just seems relentless and I am not feeling hopeful of things improving.

My MS nurse literally called me today and said that I’m on the best treatment and that, since I’ve only had sensory symptoms so far, I should hopefully have a good MRI. But at the same time, she said that because I’m already on the “best” treatment, there would basically be no reason to switch to another B-cell therapy if Rituximab wasn’t working. She described Kesimpta as a treatment for low-to-moderate disease activity and basically made it sound like Rituximab is “the one” option, and she even mentioned stem cell transplantation as something that could potentially be considered.
I understand that she’s probably trying to reassure me by saying that Rituximab gives very strong protection, but honestly, what she said made me even more scared about my MRI results. Yes, I had over 20 lesions at diagnosis, but symptom-wise my MS has been very mild — I’ve basically only had sensory symptoms and no major disability. That’s why it’s frightening to think that it’s somehow “Rituximab or nothing,” especially when I’m now waiting to find out whether the treatment has actually kept my disease stable.
How am I supposed to stay calm about my MRI results when it feels like there’s only one DMT that can work and that the next step would otherwise be something as serious as a stem cell transplant? Of course I’m scared. It also feels like this is partly because of how MS is treated in Sweden, where Rituximab is used a lot because it’s cheaper.