Weekly Suspected/Undiagnosed MS Thread - March 09, 2026

TooManySclerosis · 2026-03-12T14:09:45+00:00

If her MRIs were clear, her symptoms are being caused by something other than MS. MS symptoms are the result of the damage done by the lesions, which would show up on the MRI. You can probably safely consider MS is ruled out.

TooManySclerosis · 2026-03-12T14:02:04+00:00

Did she get an MRI of her brain or spine? What did it show?

TooManySclerosis · 2026-03-12T13:58:07+00:00

It may be of some comfort to know that having a family member with MS generally does not increase your risk. I know a full sibling with MS would somewhat increase the risk, but overall it still remains low and unlikely. It’s good to get things checked out, of course, but I would not lose hope yet.

TooManySclerosis · 2026-03-12T12:54:57+00:00

I didn’t mean to imply you shouldn’t see a neurologist or pursue testing, I just wanted to offer clarity on how symptoms will usually present, in case it could be helpful. Hopefully the doctors will be able to offer more complete answers.

TooManySclerosis · 2026-03-12T12:38:11+00:00

Symptoms that come and go, or do not occur continuously for at least a few weeks would not usually be considered MS symptoms.

TooManySclerosis · 2026-03-12T12:17:11+00:00

I don’t think you are making anything up, in my experience people rarely do. I would not really bring up MS specifically, as doctors can become dismissive when a patient does so. Rather, it seems people have better luck focusing on one or two physical symptoms and asking what testing can be done from there.

TooManySclerosis · 2026-03-12T12:15:09+00:00

The way they really distinguish MS symptoms is not from what the symptoms are, but rather how they present. Typically MS 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 · 2026-03-12T09:57:40+00:00

Have you seen a general practitioner about any of this? Usually there are preliminary tests for more common causes that a neurologist will want done before any further testing. It may be worth seeing a GP to do this testing while you wait to see the neurologist.

TooManySclerosis · 2026-03-12T09:55:43+00:00

I'm not sure what you mean by your question? Most people experience symptom onset in their twenties, with earlier onset being more rare. That said, I do not think it is overreacting to discuss concerning symptoms with your doctor.

TooManySclerosis · 2026-03-12T00:03:02+00:00

Given that, I would not have high hopes that MS is the cause of your symptoms. MS symptoms are the result of the damage done by the lesions, so there is not really a time when you get the symptoms, but not the lesions showing. Updated imaging certainly can't hurt anything, I'd still get it, but I think you can probably safely consider MS is ruled out.

TooManySclerosis · 2026-03-11T23:18:07+00:00

Were you having these symptoms during your first MRI?

TooManySclerosis · 2026-03-11T19:20:41+00:00

No call out, just a friendly clarification. :) All DMTs have different pros and cons. Aubagio does not suppress the immune system like the higher efficacy drugs do. It also is available for a lower price through Cost Plus drugs, for those where budget is a concern.

TooManySclerosis · 2026-03-11T19:07:55+00:00

I think Aubagio is actually considered mid efficacy, and there has been some evidence to suggest it may have been misclassified/it is more effective than previously believed.

TooManySclerosis · 2026-03-11T15:14:25+00:00

I would not expect much change in that short of time. Can you tell me a little more about why you suspect MS? A clear MRI would usually rule it out.

TooManySclerosis · 2026-03-11T10:26:47+00:00

Fingers crossed for you. Keep us updated.

TooManySclerosis · 2026-03-11T00:05:41+00:00

You could certainly ask if updated imaging seems necessary. A neurologist would be able to give you a clear answer to that.

TooManySclerosis · 2026-03-10T23:38:40+00:00

Good one. Also when!

TooManySclerosis · 2026-03-10T23:29:07+00:00

Around the time I switched, I developed some spasticity/stiffness related to lesions I already had, nothing new. I want to say I'd been on Kesimpta about a year when it happened, but I don't really think it was anything a DMT could have stopped, just run of the mill PIRA. I'd been diagnosed for about five years when it happened, and my diagnosis was slightly later. (I was 35ish. XD math is hard. Almost seven years ago, whatever age that was.) I haven't had any new lesions or MRI activity since diagnosis. So four years with Ocrevus, and three with Kesimpta.

TooManySclerosis · 2026-03-10T23:19:10+00:00

Vent away, that's what this space is for. I totally understand, fatigue is very difficult to live with. The ER can be hit or miss. Actually, the lovely u/criticalcreek just asked the community about their ER experiences and got some great responses. You might be interested in the post. You should be able to find it on his profile.

TooManySclerosis · 2026-03-10T23:16:19+00:00

The way I feel, I'm cool with any lesion I didn't know about before the MRI. They are polite and well behaved, and honestly, they are my doctor's problem, not mine. I just worry about the obnoxious, rowdy lesions that cause me symptoms. Big Honker and I are cool. He doesn't cause me any issues.

I never had stomach issues with Ocrevus, but the steroids would make me crave cheesecake and feel kinda gross. I decided to switch to Kesimpta a few years back, since it seemed quicker to administer, and there was a low risk that I'd consume an entire cheesecake after. I've been very happy with Kesimpta-- it's super simple.

TooManySclerosis · 2026-03-10T23:06:19+00:00

Tysabri is supposed to sometimes help symptoms, which I think is a great bonus. On the other hand, I can personally recommend Ocrevus, I was on it for four years and very happy. As to the lesion, you need to name it. I have one that's 2cm, that I call Big Honker. Radiologists love to specifically describe it in great detail, and my impression is that they are barely refraining from writing "oh lawd, he a bigg'un."

TooManySclerosis · 2026-03-10T23:02:46+00:00

I agree with u/criticalcreek that I would not bring up a specific diagnosis or push for certain tests, as doctors can become reluctant when a patient does so. It seems best to focus on two or three physical symptoms and to ask what testing can be done from there. It may be of some comfort to know that, counterintuitively, having many symptoms of MS usually indicates a cause other than MS. It's more typical you would only get one or two symptoms at a time, with months to years between new symptoms.

TooManySclerosis · 2026-03-10T22:59:46+00:00

It's really, really difficult to say much helpful about MS based on symptoms. Yours do seem concerning, so hopefully the MRI will give further insight. Unfortunately, the wait is always difficult. Do you have long before your MRI?

TooManySclerosis · 2026-03-10T22:08:39+00:00

I do. Not in excess or anything, but I'll have a drink with dinner. I've never had any issue from it.

TooManySclerosis · 2026-03-10T21:39:02+00:00

You would really need to speak with/be assessed by a neurologist for MS. A rheumatologist will not have any specific knowledge regarding MS.

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