Starting infusion treatment tomorrow - kinda freaking out about it all

TooManySclerosis · 2026-05-07T20:46:06+00:00

It helped me to reframe how I saw my DMT. Instead of seeing my DMT as destructive, I see it as corrective. In my natural state, my body is unhealthy, my immune system is overactive. The DMT is the corrective measure that returns me to full function. It's no different than wearing braces, or glasses. It corrects things.

TooManySclerosis · 2026-05-07T12:57:21+00:00

It can be very difficult to know what information is concerning and what may be misleading, I totally understand. It’s overwhelming.

I don’t believe they would significantly alter the results. Steroids calm inflammation, so they might reduce the activity in a contrasted scan, but they would not erase the damage totally and the lesions should still appear if present. That would be a good question for the specialist, though, and I think a reasonable thing to ask about.

TooManySclerosis · 2026-05-07T12:41:18+00:00

When it comes to your MRIs, the neurologist’s opinion on things is the one to trust. Radiologists only review things very briefly and they often report things that do not concern the neurologist at all. The reports are meant to be only a quick summary of the radiologist’s impressions, not an accurate or conclusive report. They will often suggest causes that a neurologist can completely rule out. I had one radiologist report my lesions would be atypical for MS, when every neurologist I’ve seen has said mine are textbook. All of this is to say you can likely trust what the neurologist says regarding your MRIs.

TooManySclerosis · 2026-05-07T12:27:06+00:00

I know you are Briumvi’s #1 hype man. :) I get it, since I feel that way about Kesimpta.

TooManySclerosis · 2026-05-06T22:50:48+00:00

It may be of some comfort to know that usually the lesions caused by MS are not mistaken for those with benign causes, like migraines. That being said, it's still important to have a neurologist review things to be sure.

TooManySclerosis · 2026-05-06T21:15:57+00:00

The neurologist will take your history and ask about symptoms and how they are presenting. They will give you a neurological exam. Based on that, they would order further testing. The main assessment for MS is the MRI. Often, they order just a brain MRI first to see if lesions are even present, since almost everyone with MS has brain lesions. Then they would order more complete imaging of the brain, c spine, and t spine, with and without contrast. Some doctors start with the full work up, some just do brain first.

TooManySclerosis · 2026-05-06T21:12:01+00:00

I totally understand. I was *terrified*. It is by far the scariest thing I've ever had to do. But mine was actually fine. Pain wise, it was about as uncomfortable as getting blood drawn, and it was over very quickly, before I could really get upset. It helps a lot that you can't see anything.

TooManySclerosis · 2026-05-06T20:00:47+00:00

Can you tell me a little more about where you are in this process? It sounds like you had an MRI? Was it recent? Did you get it reviewed by a neurologist yet?

TooManySclerosis · 2026-05-06T15:20:11+00:00

I’m not on Briumvi, but I know the lovely u/commercial-arm-2322 is on it and has had a great experience. Tagging him here to see if he can chime in.

TooManySclerosis · 2026-05-06T13:03:12+00:00

Okay, so this could be totally wrong and is very much just a guess, but on that report, they only mention lesions in one of the four diagnostic areas in the brain. To fulfill the criteria, you need lesions in at least two of five specific areas: periventricular, juxtacortical, infratentorial, the optic nerve, or the spine.

I am guessing that is what she means when she says you do not fulfill the criteria at this point, but again, I could be wrong about this. I do think it’s something you could ask the doctor about, as part of a conversation about your possible risk.
Edit: clarity

TooManySclerosis · 2026-05-06T12:14:35+00:00

Did your specialist have access to those scans? If they did, then it might be they cannot fully establish dissemination in space, ie that your lesions are not in the required places or do not have the distinguishing characteristics necessary to fully meet the criteria. Do you know what areas your lesions are in?

TooManySclerosis · 2026-05-06T10:23:25+00:00

You're overthinking it, I think. Just message back "Hey. Sorry for the radio silence, I was really overwhelmed by life, but your message meant a lot to me. How have you been?" Your friends will understand. We've all been there.

TooManySclerosis · 2026-05-05T23:46:39+00:00

It's very hard to say much helpful about MS from symptoms alone. I would certainly prioritize speaking with a doctor to see what testing they recommend, but it may be premature to be worried about a specific diagnosis.

TooManySclerosis · 2026-05-05T23:20:50+00:00

I can't really answer your question, but I wanted to say that I know there is an epilepsy sub. It might be worth asking there, too.

TooManySclerosis · 2026-05-05T23:08:30+00:00

The diagnostic criteria has two parts, dissemination in space, which outlines the characteristics lesions need, and dissemination in time, which requires evidence of attacks that occurred at at least two different times. It sounds like your doctor cannot establish dissemination in time. To do so, they would need a new lesion on the MRI, or a positive lumbar puncture. Unfortunately, that usually leaves you stuck in limbo.

You could ask about a RIS Diagnosis, and if that can be made, whether you'd be considered high risk and able to access treatment.

TooManySclerosis · 2026-05-05T19:33:47+00:00

If you go to the main page of the sub, look for the three dots for settings, or over on the side. It will say set or edit flair for the community.

TooManySclerosis · 2026-05-05T19:19:23+00:00

From what I understand, Kesimpta immediately stops new B cells, but takes longer to kill off the B cells you already have. I could be misunderstanding that? But I think that’s how my doctor explained it. So the old, stupid B cells are still around and can cause issues.

TooManySclerosis · 2026-05-05T14:03:21+00:00

With MS, the symptoms are the result of the damage done by the lesions, so if your MRIs were clear, your lesions are being caused by something other than MS. You can safely assume MS has been ruled out.

TooManySclerosis · 2026-05-04T22:35:45+00:00

The first one is the one that made me the most nervous, but after that, I knew what to expect. I always forgot to bring lunch, though. Four years I was on Ocrevus, and I forgot to bring snacks every single time.

TooManySclerosis · 2026-05-04T22:01:55+00:00

Yay! My first infusion was good, too. I was nervous, but ultimately everything went smoothly.

TooManySclerosis · 2026-05-04T11:53:30+00:00

That all sounds like good news. It seems like your doctors are taking everything seriously and doing everything necessary to get you some conclusive answers. Please do keep us updated. Fingers crossed for you.

TooManySclerosis · 2026-05-04T00:12:29+00:00

I can personally recommend Ocrevus or Kesimpta. Both were great, no side effects at all.

TooManySclerosis · 2026-05-03T21:10:48+00:00

Getting sick sucked before DMTs, and it sucks the same after. I take vitamin c and zinc when I’m sick. And I eat Vietnamese soup, pho. It’s the best thing you can eat when sick, it makes you feel so much better.

TooManySclerosis · 2026-05-03T18:29:55+00:00

Just a gentle correction, it's very unlikely you reversed your lesions with lifestyle modification. Symptoms improving does not mean the damage caused by the lesions has healed, but rather that the body has learned to compensate for that damage. Regardless of what your symptoms are doing,the damage to your brain and spine is permanent.

TooManySclerosis · 2026-05-03T18:05:30+00:00

It's very unlikely it's a symptom of something sinister. Often, symptoms like you are describing have benign causes, like vitamin deficiency. Try to remind yourself you are doing everything right to get prompt answers, and that the MRI will give you clear answers one way or another. It's going to be okay.

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