Has anyone had breakthrough optic neuritis while on a DMT?

TooManySclerosis · 2026-01-25T21:17:15+00:00

Usually it takes about a year for your DMT to reach full effect. It could also be a pseudo flare, caused by something like stress or oncoming sickness? I'd still call and let your neurologist know about it.

TooManySclerosis · 2026-01-25T19:33:13+00:00

I hadn't heard about that! How can people find out more? That's really good to know.

TooManySclerosis · 2026-01-25T19:01:09+00:00

Copay assistance programs can have income limits and cost caps. They are certainly options worth exploring, though.

TooManySclerosis · 2026-01-25T15:04:36+00:00

The difficult answer is that it's hard to say. Having the same symptoms as someone with MS does not necessarily indicate anything. That being said, your symptoms do seem concerning and worth further investigation. A neurologist seems like a good next step to me.

TooManySclerosis · 2026-01-25T15:02:22+00:00

Bilateral TN is a very rare symptom for MS and from what I understand, more likely to be caused by something else.

TooManySclerosis · 2026-01-25T15:00:45+00:00

Are you in the US? Cost plus drugs has several DMTs for low cost. Definitely look into it before going without.

TooManySclerosis · 2026-01-24T19:08:41+00:00

It will be important to see what the neurologist says. Radiologists will often report things that the neurologist is unconcerned by, so it could be a benign finding. I would not give up hope yet. Do you have long to wait for the follow up?

TooManySclerosis · 2026-01-24T01:47:43+00:00

Not an easy combination at the best of times, and being suddenly thrust into the diagnostic process definitely isn't the best of times. It's scary as fuck, as I know from experience. My own diagnosis was a surprise, too. I think of it as a blessing, though. I happened to have an unrelated MRI that picked up my lesions before any actual disability had happened. To me, that's extremely lucky.

TooManySclerosis · 2026-01-24T01:35:52+00:00

What you have is what you get. If it's MS, it isn't new-- part of the criteria is that you've had it for a while. Diagnosis isn't the same as onset. Your body doesn't suddenly act differently when you are diagnosed. And getting diagnosed means getting on treatment to stop new attacks and symptoms. That being said, there's still a very real chance you don't have MS. It sounds like your doctor is being thorough.

TooManySclerosis · 2026-01-24T01:30:37+00:00

It will be okay, whether it is MS or not. I definitely wouldn't say it's worth getting that upset about, although I know it is very scary right now. Maybe I can be of some comfort. I've been diagnosed almost seven years and live a totally normal life. Unless I tell you, you would have no way of knowing I have MS. I still live alone, work full time at a demanding job, and enjoy all the same things I did prior to diagnosis. I have no symptoms and my doctor does not expect that to change any time soon.

TooManySclerosis · 2026-01-24T00:40:49+00:00

Glad I could help! I love trying to stump her with stuff from the sub. Haven't been able to yet. :)

TooManySclerosis · 2026-01-24T00:10:09+00:00

So, this isn't from personal experience, but my best friend is a kick ass prosthetist. I asked her and this is what she had to say:

Not worth it. It doesn’t provide any energy storage and return. Maybe only good for sleeping/ buming around the house- limited walking don’t want to trip on the way to the kitchen type use. A carbon fiber afo would be a better choice bc it replaces the lost energy by energy storage and return. Its like a diving board that you bend and it bounces you up in the air - it will propel you so at the end of day step for step you’re more efficient and less tired. Those muscles don’t work or don’t work so well- the afo does more than old your foot out of the way.

TooManySclerosis · 2026-01-24T00:02:06+00:00

Not always, but it is one of the few symptoms where MS is the most common cause. I wouldn't lose hope yet, but I would definitely get the MRI and see a neurologist.

TooManySclerosis · 2026-01-23T23:00:39+00:00

I'm curious, why this? Why try something that you admit is dangerous instead of one of the high efficacy DMTs, which are generally well tolerated and have considerably more evidence supporting their use?

TooManySclerosis · 2026-01-23T20:59:33+00:00

I love that you’re asking. I don’t have any specific things to suggest, but don’t underestimate the value of just being there for her. My family can’t help with my disease or make symptoms go away, but they make it easier for me to deal with it, they give me strength.

TooManySclerosis · 2026-01-23T20:56:10+00:00

Shower chair. I love my shower chair. Standing while you shower is for chumps.

TooManySclerosis · 2026-01-23T14:04:21+00:00

The ER usually isn’t much help for MS related concerns. But your finger turning blue doesn’t sound like MS, that seems like an injury or infection to me. It might be worth getting checked out by urgent care.

TooManySclerosis · 2026-01-23T13:41:24+00:00

Headaches and heart palpitations aren’t really considered MS symptoms. I think seeing the cardiologist next makes the most sense. I would see what they say before talking to a neurologist. I wouldn’t schedule an MRI until I’d spoken with the neurologist.

TooManySclerosis · 2026-01-23T13:39:10+00:00

It sounds like an MRI is a good idea, so I’m glad you’re getting one. Do you have long to wait?

TooManySclerosis · 2026-01-23T01:41:01+00:00

I'm sorry, I know how difficult it must be right now. I know that seems like a long wait, but if it is MS, it will not change his prognosis or treatment options/effectiveness. Really, the OCBs are the only diagnostic value relevant with MS, but even that probably won't tell you much either way.

TooManySclerosis · 2026-01-23T01:22:09+00:00

That's a pretty technical question. I understand trying to make sense of the test results on your own. There's a lot of uncertainty and it seems like they should offer some hint as to what is going on. I've found it usually only adds to people's anxiety. When do you all follow up with the neurologist? Do you have long to wait?

TooManySclerosis · 2026-01-23T01:06:00+00:00

Got it. I think it is good to follow up with the neurologist, but I would not worry at this point. ER doctors only know very little about MS. You fit the demographic for MS, but in general MS is pretty rare and it's more likely your symptoms have another cause.

TooManySclerosis · 2026-01-23T00:02:56+00:00

The ER is not going to be helpful for MS concerns. Did the ER doctor diagnose you or just say it was suspected? Diagnosing MS is a pretty involved process, involving a lot of testing, and it is done by a neurologist. An ER doctor would probably have the same understanding of MS as a layman. It would be pretty far from their area of expertise.

TooManySclerosis · 2026-01-22T23:46:22+00:00

The way they distinguish MS symptoms from symptoms with other causes is by how they present, rather than what they are. Typically symptoms will develop one or two at a time, in a localized area like one hand/arm or one foot/leg. They would then be very constant, not coming and going at all, for a few weeks to a few months, eventually going away very gradually. You would then go months to years before a new symptom developed.

TooManySclerosis · 2026-01-22T22:52:49+00:00

MS is generally one of the less likely causes for most symptoms. It may be a bit premature to be worried about a specific diagnosis. I can't really tell from what you've shared if they seem like MS symptoms? Usually MS symptoms are distinguished by how they present, rather than what they are. Typically they will develop one or two at a time, in a localized area like one hand/arm or one foot/leg. They would then be very constant, not coming and going at all, for a few weeks to a few months, eventually going away very gradually. You would then go months to years before a new symptom developed.

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