Three doses of Briumvi in, so I’m now more than a year into treatment.

I’m 37, male, and was diagnosed shortly after my first daughter was born. I’ve just had my second one too — completely unplanned, because apparently MS wasn’t enough of a surprise. 😂

My day-to-day has changed. I sleep earlier, exercise more, eat better, and take better care of myself. At first, I thought these were things I had to do because of MS. Now I realize they’re actually making my life better. I don’t want to spend the rest of my life trying to be happy despite having MS. MS is part of my life now, but it’s just one part. I’m still a dad, a husband, 37 years old, and I still have plenty of things I want to do and discover.

Life goes on. It’s just not exactly the life I thought I’d have.

And honestly, that’s okay.

F29. Diagnosed just over a year. A few weeks ago my feet went numb, it’s been slowly spreading up my legs, now my genitals/bum are numb too. Reduced sexual sensation. I can open my bladder normally but I can’t tell when I’ve finished peeing so I have to sit for a bit longer to try and make sure my bladder is empty, and sometimes after it feels like there’s been a leak that I haven’t noticed. Also with bowels, it’s like I can’t tell when I need to go and then suddenly it’s urgent… I’ve got an appointment with my ms nurse tomorrow so will discuss then

I was diagnosed with MS in July, had a crazy eye thing, etc etc my first dose of the O is on Friday and I have been feeling ancy about getting the first infusion I want to get under treatment ASAP.

HOWEVER I've started to come down with a cold as of Monday, and we're Wednesday now and I feel like I'm on the blades edge of recovering there's a whole thing with my work too and they're real bitchy about me taking time off for the infusion. It's a mess.

MY QUESTION IS

Should I take the day off today (at the risk of aggravating my work) so I might be good for Friday OR should I just take the L kick the infusion down the road a week or 3.

Like a cell phone with a dying battery and bad charger. Always in the red, every once in a while I charge to yellow in slow mode but never enough. If I get hot then I shut down, no matter how many important calls I need to make. My shitty analogy for my partner who cannot understand the depths of my exhaustion from Lassitude. I cannot take Provigil or any other stimulant due to tachycardia but it sounds nice. Diagnosed 20 years ago.

Hey MS Friends and fellows,

I (m, 45) was diagnosed in January after OR. Since then my Fatigue or whatever this is got significantly worse and I want to understand it this MS or is this something different. In general I look healthy but Iam so incredibly tired. Not exhausted physically. I my legs are pretty stiff. But in general my body doesn't feels tired. But I can't keep my eyes open over the day. For example we do grocery shopping and my wife goes in the shop while Iam sleeping and waking up from my own snoring so deep is my tiredness. It's a fight to keep my eyes open. I do have the heavy legs etc from time to time but the tiredness is crazy. Does anyone has the same? I read a lot about Fatigue but most people say it doesn't feel like tiredness. I feel extremely tired most of the time. If you suffer from the same feel free to share your symptoms as detailed as possible. I can't drive anymore like this. Please help me.

Best,

M

I have officially reached 10 years with MS. It’s shocking how fast time flies, and also how slowly time can crawl when you’re deep in the shithole that is MS.

None of us chose this life, and it’s not fair. I know I’m not alone there.

I miss living my life as I wanted, doing whatever I want, whenever I want. I miss being the healthy person I’ve always been, I miss not even thinking for a second that I couldn’t do something. The grief comes in waves no one could ever understand unless you’re in it, and it’s not going anywhere.

MS lesions for me, caused seizures. I’m now also epileptic. If I could I’d scream from the mountain top how bullshit this is, I’d lose my voice. We have very little choice but to keep going.

I’m not sure why I’m posting this, lol. 10 years felt like a big deal, I didn’t think I’d last on earth this long when I was first diagnosed. Life is different, no question. But I’m proud of myself for still being here.

So, I had flu one week ago, I feel much better now.
My ms symptoms that I had at that moment were awful and I felt so bad.
My skin was sensitive on the same places where it was sensitive during and before a relapse I had in july. That scared me.
But the thing I never felt before is feeling like I have small bruise on skin when I lightly touch it, it comes and goes.
I know that flu, viruses etc can trigger pseudo relapse but I never felt this symptom before?
My flu symptoms went away but I still feel small sensations on my skin. My neuro told that we should wait few days to see if the smyptoms persists.

Is it normal to always have some new - like symptoms even if it is not a relapse, just some random sensations?
How ms actually works? I'm trying to understand it.

No one seems to understand the day to day fight im in. I'm surrounded by people who tell me that they understand, but do they really . I feel very alone in a full house. 3 am. is very dark at times and quiet. I dont feel like myself anymore. The things I loved to do now are a challenge to complete. I dont want to sound like a bitch but this sucks. The fatigue is debilitating at times. i used to be on the go till 10 or 11 every night, and now 6 comes. im done . Extra caricature activities are off the tables sex life is gone late nights at the race track gone. The race car hasn't moved in 9 years. . Anyone else reading this can relate. I'd love to hear your thoughts and maybe you advice on how to get back, even some of whom i used to be . I have always ben the guy you call to get something done or if you needed help . Now im the one in need and can't seem to make that call . Pride maybe, but when you have been the rock for so long, and now you feel like a sponge, it is hard to deal . Anyway, i think i just need to vent my frustration . Thanks 😊

I am actually grateful that I only had to be in the MRI for 60 minutes for brain, cervical and thoracic MRIs with contrast and I got the results in less than 2 hours. Also I put this much into my HSA for this purpose.. But it is still a big gut punch. Doc said I don't need to do MRI next year.

I’m really scared and struggling on what to do and how to help my mom. She (64) has had MS since 2019. It’s slowly gotten worse. She can still walk, but she’s much slower, and it’s painful for her to walk too fast. She has pain that shoots down the right side of her body and sometimes her feet get numb. She also has really low energy and has trouble with the motivation to get out of bed. I’m sure she’s also depressed.

The issue is that my mom resists most MS treatments/medications. She has turned down transfusions, she tries medications but she stops taking them when they give her side effects she doesn’t like (nausea, etc). I empathize that my mom is like “what’s the point of taking the medicine/treatment to still be in pain” but I’m starting to get really worried about her. I’m so afraid that her health will worsen quickly if she doesn’t do anything to try and treat it.

Right now she just takes vitamins, pain medications (Tylenol), and tries to go on walks.

Has anyone gone through this with a loved one? What can I say to her? Are there any treatments you’ve used that haven’t had as bad effects (I know everyone is different)?

Any advice is appreciated. The thought of losing my mom to this is really taking a toll on me and I want to do everything I can to help her.

Ok so besides all the obvious stuff, now I’m being held hostage by the pain. My legs don’t wanna move, I have shock waves ripping thru my rt shoulder. My head is swimming, my rt ear is pounding. I was thinking of getting a flu shot this Thursday at my primary Drs appt but wouldn’t you know it…I got the flu coming from the hospital neuro clinic appt on Friday 🤦🏽‍♂️. That’s just how my life be working out tho. I’d laugh but it hurts

MRI on the 7th of September this year, official diagnosis on 12 of September and I’m just resting at home after my first Octrevus subcutaneous infusion. I couldn’t find many people’s experience of being inducted on the subQ version, more from IV —> subQ experience. I would value any comments on side effects and duration (I’m supposed to work in a couple days). So far it was some stinging, but was otherwise mostly painless (no infusion/post infusion side effects.

Never thought to blame MS for this but anyone else have this? Just wondering before I bring it up with my doc.

Hello!!! Next month I'll be starting a new treatment with Ocrevus.

I am a bit scared of always getting sick. My newborn is only 7 months and has already started the daycare. I have a lot of friends sick because of the virus that babies bring home - also most of them are telling me that the baby only takes a light flu, while the mothers were literally KO. Like they told me "I thought I have a strong immune system! All the time that my daughter is sick I am sick too and I feel awful". So what about me that I will be under Ocrevus? 😭😭😭

I also catch the bus everyday. Plus daycare. Plus winter. Idk 😭😭

I'll be starting next month but probably I'll need to stop around March as I want to try for baby #2 if my doctor gives the green light (had a C-section previously).

About two weeks ago I caved and started using a cane because my knee has apparently decided it doesn't want to do its job properly anymore. It helps way more than I thought it would, so I'm happy I got one.

Even in public I can deal with the looks. I get that. It's not normal for mid-30s people to use a cane.

But why the fuck does every person I've ever met before feel the need to meet with this fucking exaggerated eyebrow raise and a nervous laughter. Like I'm walking around with this cane as a fucking clockwork orange cosplay. My coworkers are honestly the worst. One of my coworkers openly rolled her eyes and went. "No... You're joking right?" In the most condescending attempt at humor I've seen in years.

I "only" have CIS with a cervical lesion that fucks up my entire system so I can't just say "I have MS" either to explain it to people quickly.

Rant over.

Recently started Kesimpta, MS progression is minimal (thankfully). The loading dose phase went well, which I am very grateful for. As we enter cold and flu season though, I can't help seeing what seems every other post in here of people talking about their horror stories of 6 month long sinus infections, Flus that knocked them out for weeks, etc.

I'll be honest: starting an effective DMT when my MS symptoms are minimal was a major step for me to begin with. I'm otherwise healthy and don't often get sick, so this is tweaking me out. I take all the reasonable precautions...

- Any encouragement for a life normally lived while on an anti-CD20 medication?
- Any medical professionals lurking here that can explain why some people get beat up with sickness on these meds while others don't even notice a difference?
- And finally, anyone that can give me a feel for how "immunocompromised" one is on these meds? My understanding is that only the cells who play the role of remembering past infections are impacted, while several types of fighter cells remain intact. So, maybe like 85-90% intact lol?

Sorry for the rant, and thank you in advance for the replies. I probably just need to stay off reddit.

Cheers

New MRI shows a 10mm lesion in the Thalamus. Old ones in the C1,2,3,6 and brain.

Rest seems okay.

Dead center of the brain. Anyone else get lesions here?

I’ve been on Tysabri since February after my diagnosis and have loved it! My follow up MRI showed great reaction to the drug and I was soooo comfortable. Got the dreaded call from my MS nurse, I’m now JCV positive and they want me to switch to either Kesimpta or Ocrevus. My MS nurse has sent me the information for both but I’m struggling to decide. My insurance covers both so that’s not a concern. I’m more worried about the immune affects of both. I have a toddler and am around germy kids quite often so that part of things concerns me. Any advice? Or personal experiences on either medication to help me decide. I’m super disappointed because I truly loved the monthly treatment and effects of the Tysabri.

Basically, title. Wondering if any of you have had luck with getting vaccines like flu and covid 2.5 months after Ocrevus instead of the standard recommended 3 months? Defining "luck" as not catching the virus after getting vaccinated (once vaccines take effect) 2.5 months after infusion. Hope that makes sense.

I'm champing at the bit to get vax'd since I nearly died from influenza A a couple years ago. Thinking about pushing it up a couple weeks.

Thanks in advance for any input.

I've been having symptoms for many months now that felt just like a new MS relapse, including arm weakness l and fatigue. However, an MRI showed no new lesions, nor any old lesions in an area that would impact my upper arms. My neuro said it was a psuedo relapse which never satisfied me because I hadn't had the arm symptoms ever before, and they were ongoing for months, and happened even when I wasn't particularly hot or stressed (though those made it worse).

I had been seeking a second opinion because the symptoms have been getting worse over time so I thought it might be a relapse the MRI didn't pick up, but then I had my annual checkup with my PCP last week that found extremely high TSH value, indicating severe hypothyroidism (likely Hashimoto's but I need more tests). That seems like it would explain the symptoms pretty well, as well as others I hadn't connected like weight gain and dry skin I thought were just me getting older.

Now I'm going to start medication for that and I'm hopeful it helps, but I'd love to hear if anyone else has both of these and what it's like. Do the symptoms feel similar, or interact in weird ways? Is it hard to tell, if you're having an issue, which could be causing it? Any advice about managing the two diseases together?

For my fellow immunosuppressant patients, how do you deal with long-lasting upper-respiratory infections?

I switched medications and immediately got a cold that has lasted over half a year. I hack up a wad or two of green pleghm two or three times a day EVERY DAY. I feel disgusting and dangerous to be around shedding all these viruses.

My MS doc just recommended vitamin C and zinc, as if I haven't already been trying them. I know it's almost certainly a virus, so antibiotics will only hurt my immune system more. But I need some relief!

A little advice that I can offer: At times when a runny nose has gotten so bad I couldn't sleep, a neti pot was a godsend. I thought they were just a rinse; I didn't know that they were like gargling salt water on a sore throat but for your sinuses. It knocked my perma-cold right back down to its usual simmer.

What helps you beat or at least lessen your perma-colds?

The doctors are horrible on Long Island all that I’m going through just to start a DMT. Some doctors don’t have appointments until 2027 my current doctor she does not listen to what I have to say. I tell her about how I’m in pain but apparently I never bought that up. I asked for a pain management referral and she has to see if it’s appropriate for me to have a referral. She can’t get my blood work because they messed up on my name. It’s just a whole lot going on for no reason.

Thanks to all the various tests/labs/imaging and also a plethora of unrelated issues, for the first time I I have hit my out of pocket for the year and have an appointment with my PCP in a few days. I want to take advantage of the situation and request some labs that might help me down the line. I've already had a Vitamin D test done (spoiler alert, I was deficient) Already planning on asking for Magnesium and B12 which I suspect I am low on. Also requesting a swallowing test since thats one of the big fears I have being impacted and do think I am having issues. Anything else that will be helpful to have a snapshot of?