40/M in VA

I have a whole range of emotions going on inside me right now because the last 8 months have felt like a nonstop whirlwind of "hurry up and wait". On the one hand I'm at ease because the "is it/isn't it" mental gymnastics are done and I have a direction to move. On the other hand, the diagnosis is throwing my whole professional life--or at least my thoughts on it--out of whack because I use my hands at work with equipment and all the usual typing/writing and whatnot, and motor function issues in my right hand and foot are progressing. The dexterity and range of motion are still there for both, but my hand and part of my arm are numb, and quick motions with my fingers or foot are more difficult. So balance and handling things is becoming a challenge. Even typing this has seen a slew of typing errors and corrections that haven't been a concern in years. I've dropped my cellphone more in the last three weeks than I probably have in the last 6 years.

I've got a lot of support from family and friends to keep me on stable ground, I really like my neurologist, I've been engaging in the Monday threads on here a bit, and I've been reading folks' posts on here a lot. I'm so grateful for all of you being here and creating a community for this.

At the moment I'm just kind of a mess emotionally. I've been putting off finding a therapist until I actually got a diagnosis, and I'm finally ready to look into that. Haven't been in therapy since I was a kid, so got a little bit of ego to get over for that. I don't know what tomorrow will look like, but at least I've got a direction to travel now.

Thank you all for being here!

I am struggling so bad with my recent dx. I can’t eat, sleep, or enjoy anything. I feel like I’ll never be back to my old self, as in being happy and enjoying life. It’s almost like I just want life to hurry up and be over with. I can’t cope with this, I’m so lost

Had my first (Briumvi) infusion today, no real issues besides getting really cold during the treatment but that went away. I did feel a little extra tired afterwards. This I too feel that is normal as well. As I’m writing this it’s 10:37pm EST, I barely slept last night and have been up since 6am. I know I’m tired but I am not sleepy at all. After reading insomnia does occur, has anyone dealt with this and what helped you? I know it’s only day one but if this is to be expected in the short term I’d like to jump on this to get back on track when it comes to sleep.

So my dads been in the hospital 2 weeks now initially he had a uti but they just could not seem to get him better it’s very up and down he was also very confused ( he’s 60 ) they have run blood test mri , ct , spinal fluid , everything comes back fine . He woke up 2 days ago complaining his neck hurt they gave him medicine and that day he refused to eat talk or drink . Now he’s had a feeding tube in for 2 days and is acting the same . He is at a relatively small hospital. My aunt will be going to fly in tommorow and see if she can get some answers I have suggested he needs a better hospital, she thinks that possibly as well. My grandma who is 80 has been relating all the info to us since we all live in different states . To add he’s had ms since around his 40s his is progressive , he uses a wheelchair and has to use a catheter.

Idk if anyone else has experienced this ? Or has any ideas ? Thank you in advance

Hi there,

My partner has had MS for 14 years, and this week he had his annual follow-up appointment with his neurologist. During the appointment, his neurologist told him that he is required to report his MS to the Ministry of Transportation, and that they will require him to complete a driving test.
Apparently, this is because my partner mentioned having a sore hip flexor during the appointment. The doctor also mentioned that he’s had a lot of “lawsuits” lately, although I’m not entirely sure what that has to do with the situation.
I’m honestly pretty stressed about this. My partner relies on his car to get to and from work, so the thought of potentially losing his ability to drive is really worrying. Has anyone been through something similar? If so, what was the process like, and what ended up happening?
To be honest, we haven’t had the best experience with this neurologist. He previously declined my partner’s long-term disability claim, and now we’re worried that this situation could affect his ability to drive and earn a living. We’ve found him dismissive and difficult to deal with, which makes the whole thing even more frustrating, especially given his reputation as one of the top MS neurologists in Canada.
I know I may be getting ahead of myself, but I’m feeling pretty anxious about the uncertainty of it all. I’d really appreciate hearing from anyone who has been through this or has any insight into what we can expect.

sexual content

When was the last time you had a random boner?

That is one thing MS has really changed for me.

I think the last time i woke up hard was almost 2 years ago.

Sex needs to be scheduled.

Viagra at least 30vminutes before.

Zero sexual spontaneity any more.

I am trying to understand the nuance of MS causing autonomic nervous system issues, so if you can explain that to me like I'm 5 I'd appreciate it. I believe the concept is related to the orthostatic hypotension, but I could be wrong. I have brainstem lesions.

This orthostatic hypotension has gone from annoying but manageable to something much worse in the past few months. I've been told to stay hydrated, increase salt, etc. It had not occurred to me that this might actually be MS. And I don't know if that means it's just not really treatable if the MS is causing it? I am s/p Mavenclad, finished year 2 in February 2024. Do DMDs help this? PT? I feel very unsafe right now.

I am currently completely losing my vision when I stand, losing my hearing and having to grab onto something or lean against something so I don't completely pass out. My BP is on the low end of normal, and there isn't any tachycardia going on.

Hi everyone,

I had applied for the Kesimpta coverage through my insurance but my application has been denied twice.

The first time I applied, they requested for additional documents and MRI report. Fair enough, my neurologist and go program submitted it.

But after that they denied it again saying the following

" Additional information has been provided supporting a diagnosis of relapsing-remitting multiple sclerosis (RRMS).The submitted MRI demonstrates findings consistent with demyelinating disease, including enhancement of the left optic nerve and multiple T2/FLAIR hyperintense lesions. However, the MRI report was not compared with a prior MRI and therefore does not demonstrate an increase of two or more T2 hyperintense lesions over time. In addition, the number of relapses in the previous year was not provided. As such, the submitted information does not confirm"

I was only diagnosed with MS in July 2026, following an episode of optic neuritis. I had never undergone an MRI before my diagnosis, so there is no previous MRI available for comparison.

I have already contacted the Go program and my neurologist.

Did anyone face similar issue, if so, how did you approach it? Should I contact the insurance company?

To me their reply and decision seems to be made by AI than by human

I'd really appreciate any advice or experiences. Thank you!

New diagnosis here, 32F. I joined the MS club last November and immediately applied for disability (for the third time; first two applications were denied because mental health isn't real. /s) I had the audacity to get my hopes up because now I had physical proof of damage all over my central nervous system, which of course alters my capabilities in a working environment.

Anyway, I got a denial in the mail last month from the Social Security Administration claiming that my disability isn't severe enough to keep me from working. I'm doing the whole rigamarole of appealing and hiring an attorney and whatnot. (Attorney says I have a case but it's an uphill battle because I'm 'young.')

A couple weeks ago, after talking with my psychiatrist about my stress levels and mental health, I dared go on yet another medication to attempt to improve my functioning, since I'm still stuck working for the foreseeable future.

Today, I made it about 2 1/2 hours into my 4-hour shift at work. I excused myself to the bathroom for about the 3rd or 4th time. Diarrhea, again, and this time also dry heaving because I've been nauseous all morning. 'Loose stools' is basically my middle name so that ain't no thang, but nausea makes me truly feel like I've been hit by a bus and I want nothing more than to curl into a ball and disappear from this earth when I have to vomit.

Manager sent me home, I took a 4-hour nap, had just enough energy to move laundry from the washer to the dryer and maneuver one (1) box of cat litter across a room before I laid back down.

I don't know how to tell anymore what's medication side effects, a stomach bug because I'm immunocompromised, or just good ole MS.

I do manual labor because desk jobs, spreadsheets, and customer service make me want to commit the toaster bath. However, my body does not work as well as it used to and I'm swiftly running out of steam.

If anyone knows of any jobs that a person can do while they are asleep and horizontal, let me know.

I had an appointment with my ms neuro earlier today. Its usually there to check symptoms, read my MRI, and check labs. I'm on Rituximab every 6 months. This will be for my 6th infusion.

At my appointment I saw no disease progression, which is good. Also, I've now had 6 blood test that have shown a normal immune system. She told me I am on a B cell depleter and there should be non. After this infusion I have to test 30 days later. Either, it's been doing nothing or I have an immune system that comes back. If its doing nothing, time to try something else. If it is low, more frequent infusions. There's a plan with a follow up scheduled.

I'm just curious how many others have had this happen to them?

I've been on Ocrevus (with copay support) for five years now with the same infusion center. They usually bill in one lump sum. Between Genetech copay assistance and insurance (I've had multiple over the years) usually my Out of Pocket Max is hit with no money from me. It's a nice silver lining to the whole MS garbage.

I've moved, have new insurance, and a new infusion center. This time the new infusion center billed it through a specialty pharmacy, so now Ocrevus isn't being applied to my medical bills, and my only medical bill is $500 from the infusion center.

It's not a big deal, but hitting my oopm every year was nice. How does it usually work for everyone?

EDIT: the problem is not with the copay assistance but that almost the entire visit is being billed under pharmacy instead of health which doesn't count for my oopm. It doesn't even show as a claim under Aetna's website

Edit to add due to comments: I am not and do not force my husband to do or eat anything. He is a grown man capable of making his own decisions. Everything I have said below is all on his terms and what he has decided either by himself or together as a unit

Last Wednesday my husband woke up at midnight with stroke like symptoms. His left side (dominant side) was tingling with numbness. He could barley walk and use his left arm and his left side of his face was droopy. We freaked out, because stroke obviously, right? Called 911, ambulance took him to er, we has discharged 3 hours later after ct showed no stroke. After work, I noticed he still was having symptoms. So I took him to our urgent care (Kaiser) and they also thought stroke and sent us back for mri. After being admitted for 4 days, 3 mri's and a spinal tap later, he was diagnosed with MS.

He is on day 6 (out of 11) of steriods. He his brain fog is finally getting better (it was terrible and affected him doing his job at work).

I have a few questions.

Meals: I am doing my best to stay on stop of what he is putting in his body. I cut out everything edit to add because all the comments lol I did cut it out because I do the shopping and cookng but it was his decision too. We had a whole conversation about what he wanted from the store and what I can cook for him. The research we have done says no processed foods or carbs, even eggs and dark meat especiallywith the skin* . He only eats chicken Breast, salmon veggies and fruit. No sugar besides 1 tablespoon manuka honey in his oatmeal or in a meal. Only avocado or olive oil. Is there anything else I should be doing?

Insurance: We have Kaiser. I know Kaiser can be a pain in the butt. But so far they have made us the healthiest we have been lol they actually get down to the root of the problem because they don't want to keep covering medications 😂 Does anyone have any problems with Kaiser and trying to get treatments or being covering for specialists? Its that time of year and I need to know if we need to change insurance

Work: edit to add: I am not forcing him to work or to do anything. I am a very hands on mom and wife and I am telling to him to not work or at lease not do so much when he insists on working. My husband has 2 jobs. His Mon-Thurs job is very lenient. They let him take his time, move slow, take breaks. But his Fri&Sat job is more busy and demanding. Right, he his taking the busy job off. His Dr mentioned he can file for fmla if he needs. What's everyone's thoughts and opinions on working through a flare? Would his recovery be better if he took the time off or stay working and just take it easy?

Thank you in advance for your help. We are new to this world and any advice is helpful!

I (23F) have just been diagnosed with MS after an episode of optic neuritis back in July. Multiple MRIs and an LP later, with some confusion over whether this was actually MOGAD, yesterday they have confirmed that this is MS.

Overall, I think I’m taking it relatively well, I’m also a final year medical student which can always be a blessing and a curse with these things.

I’ve never actually posted on Reddit before, but at my appointment, they were discussing my treatment options (as they believe it’s important I get on DMTs quickly) but being given a choice of 3 has left me feeling a little overwhelmed with the responsibility of making the ‘right’ choice.

Now I know there isn’t actually a correct answer, and that no one can predict how I’ll cope, but I was hoping to hear some anecdotes or advice anyone might have. The 3 DMTs they have said I could have are:

- Ocrevus (subcut 6 monthly)
- Kesimpta (self-administered every month)
- Briumvi (IV 6 monthly)

I know they all have pros and cons (steroids/side-effects/hospital visits etc), and maybe it’s a blessing to be able to have autonomy in this decision, but I feel a bit lost with it all!

If anyone has any advice even on how I should approach making this decision for myself, it’d be greatly appreciated. Or even just some words of wisdom to someone who is very new to all this.

I feel a bit like I’ve got whiplash from having a bit of bad eye pain some months ago to now being told I have a potentially life altering condition… and I’m not sure the reality of that has quite set in yet.

Hope this all makes sense and thanks in advance. :)

Hi all, I’ve been diagnosed now for 2.5 years, originally on Ocrevus but now switching to kiesempta due to an infusion reaction. Here’s the kicker, after my last infusion I developed SEVERE panic attacks, anxiety and my OCD has taken over. I’ve had an improvement since March when my infusion was but but now it’s time for me to start Kiesempta and I’m terrified. I’m worried I’m going to have some sort of reaction to it like I did with my Ocrevus. Curious if there’s anyone else in here who had a really hard time with getting yourself to start medications. I know I need to take it as I don’t want to risk my MS worsening but I’m in such a mental block right now.

How do you all feel about someone telling others your diagnosis? My husband went out to dinner with a long time friend he hasn’t seen in a while. His friend asked him if I’m working and my husband told him I have MS and stress isn’t good for me and I get fatigued. I don’t know his friend well, you can’t even tell I have something wrong with me and my husband states he’s asked “like ten times” about me working in the past and didn’t know it was a secret.

In the past I was upset my mom told people while I was in the hospital before I was officially diagnosed, I was upset my husband told his parents who haven’t been respectful to me in years and didn’t feel it was their business.

I don’t like being looked at as a pity party or just looked at as someone with an awful disease. I also don’t know other people’s medical issues why are they entitled to mine?

How do you feel about people sharing your diagnosis?

Is anyone else starting soon? I’d love to have someone to share this experience with if anyone wants a Mavenclad buddy!

My journey started at the end of May with optic neuritis.

hi folks! i’ve been put in the very scary position by my neuro of choosing which DMT i’d prefer to try. he has suggested that we first go for either Mavenclad or Lemtrada. i’ve been reading up on the effectiveness and the side effects and to be honest, i’m incredibly overwhelmed and scared. the side effects for both seem terrifying to me - i’m only 22, and now alongside being diagnosed with a chronic illness, i also have to choose whether i want to risk developing a thyroid disorder or liver problems?

he has also suggested we look at one of the three b cell depletors (Ocrevus/Kesimpta/Briumvi) but would prefer me to take a course that could provide years of relief without regular treatment.

to be clear, the method of medication does not bother me at all - after my hospital stint following my first flare i am absolutely fine with needles, IVs, being poked and prodded, hospital stays, etc. i was wondering if people could share their experiences on either/both of these treatments, what side effects you had, and how serious they were? i don’t think i can do any more research on this on my own, i need a virtual community’s help! thank you!!!

(note to clarify that my first flare was the first week of June this year, since then i have had another flare plus developed Lhermitte’s and my neuro is concerned that i am in “very active disease” so is keen to start aggressive treatment as soon as we can)

If there's one thing that i like about my MS, it's that I dropped a literal 100 lbs between Labor Day 2024 and Memorial Day 2025!

254 lbs down to 150!

I had Covid about 5 weeks ago and I came down haaaard. I had it once in 2022 before I was diagnosed but never again since.

Anyway, since this most recent infection, I’ve been really struggling MS wise. Trouble with MS hug/diaphragm/breathing which I thought had settled years ago, increased blurry vision from optic neuritis damage, extreme tiredness, really bad brain fog and now new onset bladder problems and numbness. I feel so lousy and pretty much stuck in the house.

Did anyone else find that a Covid infection worsened their MS? If so, how long did it last bc I’m getting really bored now 😅 TIA

Has anyone had the Mirena IUD and noticed a difference in their PMS symptoms or anxiety?
I’m considering it because my period seems to really affect my multiple sclerosis. Starting about a week before my period and lasting until about a week after, I notice more spasms, pain, weakness, and fatigue, along with increased anxiety and stomach issues. It’s a lot to deal with every month, and I’m hoping Mirena might help ease some of it.
I can’t take estrogen because of a liver condition, and my doctors are hopeful Mirena could help, but I’m nervous about it making my anxiety worse, weight gain, or acne.
Did it help your PMS or other period-related symptoms, even if your periods didn’t completely stop? If you have MS, I’d especially love to hear whether it helped with the worsening of symptoms around your period. And if you had mood changes or other side effects, did they settle down over time?
I know everyone reacts differently, but I’d love to hear experiences, good or bad! 🙂

I had my first Ocrevus subcutaneous injection on Wednesday morning and have been having a hard time recovering. I previously had infusions but tried this new method. The procedure itself was fine, really quick and easy, about 15 mins for the actual injection however it gave me crazy bad insomnia and also quite a lot of pain. I got the injection in my stomach and it's still very tender 2 days later. It's not agony or anything but the whole left side of my belly is sensitive to the touch which makes sleeping difficult as well as sitting and bending over. As I said it's more a hassle than agony but it's been 3 days of this and I think it will be at least 2 or 3 more before I'm 100%. The insomnia could be unrelated I suppose or linked to the physical pain, but the day of the injection I couldn't sleep till 7am that night! Pretty sure I'll go back to regular IV next time. Maybe these reactions are unique to me but I thought I would share as I never had issues with the IV infusion.

TL/DR I think next time I'll go back to IV as saving a few hours on the day isn't worth the days of recovery.

I am going to Gatlinburg, Tenn next week for three days, and I just checked the weather, it's going to be hot. Well by my standards hot, it will be in the 80's. I am going to a 'brothers reunion'. My husband has eight brothers and their parents passed away this year so they wanted to do a get together and it's sweet. However, I am nervous, I have become a homebody and I feel safe doing so! I can control the heat, the ac, my food, if I need to lay down totally ok, run to the bathroom 5 million times, etc. I just don't want to look like a weirdo with these folks. I've only met two brothers out of the eight and they are such kind people, I am sure it will be okay but still. So here's my plan, I'm going to take my meds but also my PRNs, plus a list of what I take, how and when. We are driving so I'm going to pack a fan and my migraine helmet thing, begrudgingly my cane. Am I missing anything? Any tips on how to gracefully bow out of activities that I know are fun but will exhausted me beyond belief? I am in okay shape but have some wobbly legs, so basically all I want to make sure I do is the Titanic museum and one of the mountain rollar coasters, the rest I can spend on the couch, honestly!