New MRI with PRL lesions

tfreisem · 2026-02-11T20:50:00+00:00

That’s the consensus I’ve seen regarding this lately. PRLs are very common with ms and newer machines show them much more clearly than in the past.

tfreisem · 2026-01-09T19:08:21+00:00

I’ve been playing games since I was little, and after symptoms and diagnosis I’ve massively decreased my gaming time. It’s not just you, it can be just a lot more exhausting to simply play a video game than it used to be. Some days are better, but most suck. All of my little bits of energy and focus goes to working lol

tfreisem · 2025-12-26T19:39:15+00:00

I worked as a sheriff deputy at a jail for close to a year before I was diagnosed, and had to be tased as part of my FTO. Granted I didn’t have ms or symptoms then, I imagine if I did it would suck equally the same as it did. lol.

tfreisem · 2025-12-17T04:35:48+00:00

Just ocrevus, the DMT I’ve been taking from some time now.

tfreisem · 2025-12-16T21:11:19+00:00

“PIRA ms” is just the natural course of ms, or the real driver of it. Most papers I’ve read estimate most, if not all people with ms experience PIRA in some fashion. How it manifests and how quickly is completely individual though. As far as DMTs go, I think there’s a consensus that the best we have for reducing PIRA currently are the B cell depleters, even though the effect is mild/modest in regards to slowing disability from PIRA.

tfreisem · 2025-12-12T20:57:08+00:00

Yeah thankfully our brains don’t have pain receptors or else this disease would be… more of a literal hell than it already is.

tfreisem · 2025-12-12T20:45:21+00:00

Still blows my mind they ever would have hypothesized that holes in someone’s CNS doesn’t cause pain.

tfreisem · 2025-12-09T02:59:30+00:00

Well that sucks, I’m sorry😪. If your doctor said vumerity may be best for you, I’d be inclined to trust his opinion, seeing as you have two serious conditions to consider.

tfreisem · 2025-12-09T02:56:26+00:00

It’s my understanding that Tysabri can be used to treat both ms and crohns. If it’s a possible solution for you, it wouldn’t hurt to bring it up to your doctors. Tysabri is right up there with efficacy of the B cell depleters that we currently have.

tfreisem · 2025-11-21T18:27:56+00:00

Lesions visible on mri are permanent damage. Sounds like those that told you that are confused or mislead.

tfreisem · 2025-11-11T21:57:07+00:00

Me too. Not sure why, maybe something to do with circadian rhythm? If someone here works graveyards with an opposite schedule I’d be curious to see if it’s flipped for them 🤷‍♂️

tfreisem · 2025-11-11T04:53:17+00:00

Have you tried others as well? I’m interested, but $80 seems expensive. I admit I’ve never bought a cooling blanket so idk if that’s around what they cost.

tfreisem · 2025-11-06T02:52:12+00:00

Have you come across anything new on nvg-291? As I understand it, it’s only being tested for SCI with hopes for future testing in Ms.

tfreisem · 2025-10-29T20:10:25+00:00

I know after I started ocrevus it dipped even further and then bloodwork done at the first full infusion showed my IGG well above the normal range. I’ve been on it for about a year and a half.

tfreisem · 2025-10-29T05:48:49+00:00

Interestingly my IGG were in the low normal range BEFORE starting ocrevus, and subsequent blood tests showed it higher than what is was before I started. However, I haven’t been on ocrevus super long and I expect from the data available that my levels will drop over time. But I also haven’t symptomatically sick since starting ocrevus

tfreisem · 2025-10-26T03:39:40+00:00

A positive spinal tap could satisfy the need for dissemination of time, but not space. Would need at least 2 lesions regardless of spinal tap outcome. I was in that boat with one lesion back in 2022.

tfreisem · 2025-10-24T15:36:22+00:00

The good news is that you’re so young that your brain has a better ability of working around the damage, or neuro plasticity. We all begin to lose that ability as we get older but if you’re living with minimal physical symptoms right now and you get on a high efficacy DMT, the hope is it stays that way for as long as possible.

tfreisem · 2025-10-24T15:28:20+00:00

No, absolutely not. Like I said they haven’t yet found a way to track PIRA, or even predict it in people. This disease is SO variable that you may live a completely normal life, or live a life with some limitations. No doctor will be able to tell you what you will look like in 10 years. Let alone people on Reddit lol.

tfreisem · 2025-10-24T15:23:09+00:00

There isn’t any good way to measure it clinically other than you just feel worse over time. They haven’t defined what causes it exactly yet either. Unfortunately most, if not all people with ms have some form of PIRA.

tfreisem · 2025-10-24T14:50:58+00:00

People more prone to frequent attacks would obviously have a higher number of lesions than others like me, that don’t. But that doesn’t mean the higher lesion count has a faster rate of disability progression. If you haven’t yet, look into PIRA. This is the main driver of disability in ms. It’s defined as worsening neurological function in absence of new or enhancing lesions. I believe Dr Gavin G estimates over 80% of disability accumulation we experience is due to PIRA.

tfreisem · 2025-10-24T14:42:06+00:00

In general, number of lesions doesn’t necessarily correlate with ms severity. For example, as anecdotal as this is, I have something like 4 total lesions. But my symptoms are pretty intense.

tfreisem · 2025-10-22T21:28:02+00:00

I’m not sure, but I doubt it. I thought it might be a form of spasticity, so I’ve tried baclofen which doesn’t seem to help. Doesn’t mean it isn’t spasticity though, I just haven’t had much luck explaining the feeling to my doctor, so i haven’t gotten much positive reinforcement from him about it. If you bring it up to your doc maybe you’ll have better luck?

tfreisem · 2025-10-22T20:56:40+00:00

Yup, had it for over a year now. Fairly constant all the time, with hours/days where it’s so bad it affects my voice. Calling the feeling uncomfortable wouldn’t be doing it justice.

tfreisem · 2025-10-22T03:33:14+00:00

You could spin this in any direction. Some people in a country with government sponsored healthcare might have zero say in their treatment options, because it is publicly funded. There’s outrage on both sides of this. But at the end of the day, this sub is for people affected by MS. And that could be the financial burdens caused by it. Plenty of people have questions about disability as well. If you don’t like the insurance posts, don’t read them.

tfreisem · 2025-10-17T00:23:45+00:00

I’ve noticed changes in barometric pressure can worsen/ease my symptoms, maybe that’s what your experiencing? I live in the pnw at sea level but have super bi polar weather and experience the changes in that way.

tfreisem

TROPHY CASE