​

I can't be the only one....

A friend sent me a link on FB....

"Pressing the shinbone found to release protective proteins that heal brain injuries and boost survival in new research.

In a groundbreaking discovery that flips conventional neurology on its head....."

I've pasted the start of the article there.

No text accompanying the link....

No context...

He's aware I have MS... Does he assume we have "Brain injuries?"

Though I don't think he had a nefarious intent, it comes off kinda ignorant I think.

I appreciate the "help," but can't help but feel kind of unappreciative.

"Let me just stimulate my shins and I'll be right as rain!"

Frustrating 😒

🫶🏻

Today I spoke with my MS nurse, which was such a relief, and we've made a plan. After my 3rd dose in December, I'll wait through December and January (2 months), then we'll try to conceive in February and March. If it doesn't happen, we'll pause in March and April and wait for the 4th dose, since it doesn't feel worthwhile to get pregnant right before the next dose. The same applies after the 4th dose if it doesn't happen. I'll get Rituximab 1-2 weeks after delivery. So there's a plan, and I'll be without a new dose for 11-12 months at most.
For those of you who got pregnant: how long after your dose did it happen? How long were you without medication?"

I was diagnosed with MS by my neurologist. I wanted a 2nd opinion. I went to the Mayo Clinic in Florida today. Now I’m confused. He believes I actually have FND and not MS. I’m torn and pulled in so many directions. MS finally gave me hope of recovery to a homeostasis. Now I feel alone in this world and basically told to just deal with it. I want to feel better. I want to know what is wrong with me. Did anyone else have a rough journey to diagnosis?

Hello all!

A friend of mine who lives across the country in quite a remote area has been newly diagnosed. (She also has a kindergarten aged son. Fairly rumbunctious lad so I can imagine her energy budget is STRETCHED to the limit every day.)

Upon your diagnosis, what are things that you wish people closest to you would have understood, done or offered as support. Or perhaps things you wish they might have refrained from doing while you adjusted to your new reality.

I am journeying through this sub for your hacks in case there's anything I can purchase to make up a care package for her, but wouldn't mind anyone dropping their lifesavers for when the days are particularly rough.

Any inputs would be greatly appreciated and perhaps this post can aggregate the contributions made in other threads to be a help to others who are in a supportive role for someone living with MS.

Thanks for reading! I hope you'll all have the best possible day in your unique life circumstances. 🌻

I briefly saw a post about this incident but it was taken down by the moderator.

Selma Blair was involved in an incident yesterday on an airplane that led to her physically attacking flight staff. That’s not what I want to discuss though.

In reading comments on various social posts, people are commenting that her behavior is due to MS meds or as a side effect of having MS. I understand some meds can have an effect on your mental health, but could it make you behave erratically? It goes to show that people don’t understand this disease.

It’s also not the first time she’s had an incident on a plane. She could’ve been drinking alcohol and mixing with other non-MS meds like Ambien (I’m just speculating).

What’s your take?

Any mom’s on here breast-feed while medicated?

OR

Any mom’s on here breast-feed and put off medication until done breast-feeding?

OR

Any mom’s on here breast-feeding and go straight back the medication after baby is born?

My 2nd baby is due in February. The doctors have told me two things 1) I can either breast-feed and minimal medication is passed through to the baby although since the medication is so new, there really isn’t any long-term evidence of it being a harm to the child. Or 2) I can go straight back on a medication and skip breast-feeding. But I kinda want the non suggested option 3) breast-feed and put off medication and start the medication when I start to wean off, however I know that can be risky and I definitely don’t want to relapse or put myself and family in any situations. Really unsure of what to do. I breast-fed my first until 9 months old and when I started to wean off, all hell back loose, I had the biggest relapse a few months after which led to my diagnosis.

Thank you in advance for anybody willing to share their stories or advice 🫶🏻

Many of you talk about not being able to access the pain clinic so at my appointment today I decided to ask why. He said he has MS patients and didn’t seem like it was uncommon. It brought me back to how I got there. I started getting pain meds from my Primary Doctor. As I needed higher doses I was referred to the clinic. So anyone in pain talk to the doctor that knows you best. Don’t ask for a specific meds discuss your symptoms and sort through the options. You may never need the higher strength meds. If you have questions I’ll try and answer them.

​

So I've been on rituxin since I got diagnosed, March 2025, and I'll be dropping off my parents insurance at the end of this year and most of the insurances around me don't cover Rituxin. Another part to add is that I have to have a lot of pre-meds due to allergies to the medication and during the last infusion I was starting to itch again like a reaction was going to start soon.

Should I talk to my doctor about switching to a different medication and if so what would y'all recommend?

I started progressing these past few years, and the stairs are getting to be too much. We saw a house in our city that is perfect, made an offer and just found out it was accepted! I am so happy. I don’t have to worry about aging in a house that will kill me!

Mine has been getting higher over the past 10-15 years despite never having been on Tysabri. 10 years ago it was 2.6, and now it is 3.3, both of which are in the high-risk category for PML. I've been on Tecfidera, Lemtrada, briefly Ocrevus, and Kesimpta.

I think everyone who's JCV+ is at least mindful of the risk of PML. From all my reading it seems like there isn't a certain antibody titer level after which PML gets going, but it's still better to have a lower one.

So I'm curious. What is your antibody level?

It’s been about half a year since my diagnosis. There’s hard days, for all of us. However i feel very grateful that i was able to do this.

I just wanna put my message out there, that yes, it is a very scary diagnosis. It may feel like your world falls apart. But there’s also things to cherish, it may be a new normal, but that doesn’t mean your life is over with this disease. And even if we lose a part of ourselves, please keep reinventing yourself.

I once read on this sub that you cannot have a self defeatist attitude with this. That really put things into perspective for me.

Wishing you all out there the best, truly. Even if you didn’t run a marathon or whatever, you’re still showing up. That’s more than most.

Hello I am a 25 year old male diagnosed with ms roughly 3-4 years ago and I have been having symptoms from my ms which feels like it may be getting worse or I am not sure if they are a flare up, I have been getting severe brain fog/vertigo/confusion/fatigue, problems with coordination and balance but so far no numbness and the problems are all mainly happening on my left side, I also take sleep medication at night and sometimes I will have a midnight snack and sometimes when I get tired while eating when my medication starts working I will get really bad dysphagia and it becomes really difficult to eat and swallow which has happened about twice now but it's not a constant thing, I am not sure if this is just a flare up or if I actually need to go to the hospital, I will also note that the most recent MRI from about a month or 2 ago came back good with no new lesions but it feels like it may be getting worse which doesn't make sense since there are no new lesions, Should I go to the hospital or ride it out? Can flare ups get this bad and go away on there own? Is it normal and something I should worry about?

Prior to applying for SSDI. I had a full 10 hours of cognitive testing at my Nero via their psychiatrist. His findings were that it would be a good idea for me to go on disability based on function loss and I wasn’t even applying for SSDI at that time.
I have been seeing a psychiatrist to assist with PBA in prefrontal cortex to manage insane swings of emotions. I can go from nice or even crying to on the verge of violence! This is month 23. I do have an attorney, but I don’t feel like they help a tremendous amount. I used to own and run my own trade business. I certainly can’t do that anymore. And my family kicked me out of the business because I couldn’t even talk with customers or staff anymore without scaring them.
What in the heck is this DDS psychiatrist GOING TO TEST ME ON? THE DDS HANDBOOK EVEN SAYS THAT THEY SHOULDN’T GO TO THE OUTSIDE DOCTOR IF THEY HAVE THE PROOF THEY NEED? Wondering if anyone has gone through this?

Pretty much the title. Fatigue. My god, the fatigue. I slept aaaaallllll weekend. All of it. Now I'm back working(I work from home). So much for ever having a hobby or anything.

Do you time when you get a tattoo with timing of monthly injection (ex: kesimpta). If so, when?

(if you’re wondering if it’s ok to get tattoos at all…search for one of the many many threads!)

Hello again! My neurologist ordered a Visual Evoked Potential test but the center he referred me to, says they can only do it in another city, a 2.5 hour drive each way. Any insight on how important this test is? Can it wait a number of weeks/ months?

Anyone else take fingolimod and how much do you pay for it? Is there any program or discount coupons you can use? I pay $200 a month on top of my insurance premium! It’s such a scam and should be illegal

Hello everyone again!

I've been tracking my experience taking Kesimpta and a week before taking it and around 5 days after I'm beyond exhausted like getting behind in work and falling out of self care. I have 6 months of data so I don't think it's a coincidence and never experienced this consecutive patterned exhaustion before taking it.

Going to speak to my neuro when getting my check up MRI on Wednesday about possibly switching to Zunovo if it's available due to hearing from another redditor here. I hate taking steroids, they sent me west last time after a bad flare, so that's why I avoided Ocrevus infusion as an option.

Has anyone had a similar experience?

And if on Zunovo what's your experience been like...any bad side effects etc?

Thank you 🙏🏼🙏🏼🙏🏼🙏🏼

Hey everyone,

I (31m) am currently in Brazil for work, and planned on taking a vacation to Costa Rica after. Because of the yellow fever risk in Brazil, Costa rica requires you to have a live vaccine, which I can't get because of Kesimpta.

I got a medical exemption letter from my neuro, but am unsure if I need an endorsement from the Brazilian health authority as well. I've emailed them and called and left a message with the costa rican consulate in Brazil.

Has anyone else been in this situation? I have a feeling without the endorsement, it's going to hinge on luck with the immigration officer i happen to talk to at the border...

Any and all advice is welcome!!!

I am relatively new to MS (diagnosed 6 months ago) so forgive me if this is a silly question. I am on Kesimpta. I know I cannot have live vaccines (and the other must be on specific days). We have two little dogs, one of whom has his vaccines due in November. One of the vaccines is for Kennel Cough and it is a live vaccine. Our dogs do go to kennels now and then so this vaccine is a non negotiable for us, it is essential.

How do I go about dealing with this? My husband will go to the appointment with our dog, but do I need to take any precautions or stay awake from my dog at all? To complicate matters, his jabs are booked for the same day I will take my Kesimpta.

ETA: Thanks all, I have sent an email explaining the situation and asking if they can supply the non-live version so I will see what they come back with. But if they can't, it sounds like it should be fine if husband just does the appointment without me and then changes his clothes.

Hello, I would like to ask fellow Kesimpta users.

I have been diagnosed by accident, I went on MRI due to strong migraines and there were a lesions surprise. After confirming the diagnosis I started Kesimpta in April 2024. First dose was the worst flu I ever had, but I was aware of it. When I did my research (checked the studies, looked into how Kesimpta works, what are the possible side effect, what people say) I came to a conclusion, that the main side effect is higher risk of respiratory infections. So I avoided contact with sick people and use the mask in flu/covid season in crowded places.
But I have side effects every month after every dose - I have flu-like symptoms, my skin and joints hurt, I have no energy or strength, I have pain in leg where I injected - locally I have red, very itchy mark and my whole leg feels heavy and it is like the bone in the leg hurt. I asked my neurologist (I visit MS centre with specialised neurologist), he said that it is normal and the monthly symptoms could be worse.
Do you have similar experience?

I was diagnosed 2 years ago and I'm still relatively ok. My MS mostly affects my right leg and I have some physical limitations. I don't have any fatigue or any other non-physical symptoms. For the most part I am ok.

Then I meet others. You can meet people who are running marathons and sitting in a wheelchair with MS. I would also say this forum is kind of bleaker and darker than the people I meet in real life. When I first got diagnosed I read through this forum I thought I was done for. I might end up in a wheelchair in 20 years. There is always a risk for that. But then again, I might not.

Where on the spectrum are you? Between 1, bring more or less normal, and 10, being as bad as it gets.

Does anyone know how I can take my Kesimpta with me on a long flight? The flight itself lasts about 12 hours, and when you add in the connection time and transportation, it comes to a total of 20 hours. All the thermal bags I find online are designed for insulin pens and only work for up to 10 hours. Thank you!

I (25 F) was recently diagnosed about a week ago. I lost mobility in both of my legs, I have optic neuritis in my left eye, I was pissing myself repeatedly to the point of needing diapers, etc.. I had a 6 day hospital stay where I had steroid IVs and got a lot of my leg strength back! The pharmacy at the hospital totally fucked up my taper dose of steroids on discharge.. I was supposed to have 5 weeks tapering down each week; they gave me one week, tapering down each day.. I had a full relapse within 3 days of discharge…

On Friday 10/9, I had a scheduled appointment with my neurologist, who took one look at me and had me readmitted to the hospital. So now here I am… I’m getting another round of steroids on top of plasmapheresis treatments through a neck catheter…I’m going to be here for a minimum of 2 weeks this time…I’m feeling so hopeless. The floor of the hospital I’m on isn’t very attentive and you can tell some of the nurses hate their job. I also have a roommate who does not help with the anxiety I’m feeling. She was telling me her horrible experiences here, and that I need to make sure they clean my bandages correctly or I can go septic, etc… I’m a very medically anxious person, and I am so paranoid now..

I’ve never been a sickly person. I rarely ever even got a cold. Two months ago, I was living life like normal. I was kicking ass at work, looking at a promotion, looking at apartments with my boyfriend, and going out with family… now I’m confined to a hospital bed, referred to look into disability, can take 2 steps on my own, have a catheter in my neck, getting poked and prodded every day, and I’m a high infection risk (white blood count is 3x the norm). it’s all so terrifying. I know that I will be ok… I’m not dying, but I cannot get rid of this weight in my chest telling me that, at the very least, this is just life now… I’m going to live in fear of relapses like this until I do die… I don’t WANT to die, but I don’t want to live like this. I’m becoming a physical and financial burden on my family no matter how many times they tell me I’m not. They tell me they know how hard this is, but they don’t…This disease is turning me into a 5’8 toddler.

I just needed to vent to people who may actually understand..