Fleeting Symptoms

[haps]

I would really appreciate some clarification about progression.

If you have RRMS and for example, you have a numb arm, then are subsequent symptoms BEFORE the next relapse only concentrated in the arm where there was previous numbness, i.e. restricted to the original area of damage as the area heals or is overheated?

The reason I ask is because my symptoms (undiagnosed) have always been fleeting, never 24 hour and always changing. They can literally appear anywhere and everywhere (limbs, torso and head). And I wonder if that automatically would point me towards progressive MS if anything, as RRMS would stay in the areas of relapses. However I am entirely sensory + twitching only rather than presenting with some motor deficit or the like, which, as I gather, is more often how PPMS presents being mostly located in the spine?

It is very confusing and I know it is atypical but would really appreciate the feedback. Thanks.

[SNOOPY]

Hello haps,

MS is a progressive disease...period.

However I am entirely sensory + twitching only rather than presenting with some motor deficit or the like, which, as I gather, is more often how PPMS presents being mostly located in the spine?

No, that is not correct. A person with MS can have mostly spinal cord involvement and they can have RRMS. I have very few brain lesions but my spinal cord has numerous lesions and I have been RR from the begining.

PPMS has relapses but usually no improvement, symptoms keep accumulating causing more disability.

RRMS has relapses ( a worsening of old symptoms and/or new symptoms lasting more than 24 hours). Improvement in symptoms can be seen (time frame variable) and the patient can have residual symptoms and symptoms that come and go.

Remission is not a correct term to use with this disease. This disease is never inactive and is doing damage even when the person feels fine. Remission can be complete (no symptoms) or partial (residual symptoms, symptoms come and go).

[MarkLavelle]

I would really appreciate some clarification about progression.

If you have RRMS and for example, you have a numb arm, then are subsequent symptoms BEFORE the next relapse only concentrated in the arm where there was previous numbness, i.e. restricted to the original area of damage as the area heals or is overheated?

Definitely not. It's the CNS that's damaged, not the limb. For example, a lesion high in the cervical spine could cause symptoms anywhere from the neck down. So even if it initially caused only foot trouble you could still have hand trouble later without a new lesion.

The reason I ask is because my symptoms (undiagnosed) have always been fleeting, never 24 hour and always changing. They can literally appear anywhere and everywhere (limbs, torso and head).

If no symptom lasts more than 24 hours I'm not surprised you haven't been diagnosed. I'm still relatively new to MS, but I've yet to hear of a case without any 'attacks' lasting more than a day.

And I wonder if that automatically would point me towards progressive MS if anything, as RRMS would stay in the areas of relapses. However I am entirely sensory + twitching only rather than presenting with some motor deficit or the like, which, as I gather, is more often how PPMS presents being mostly located in the spine?

I agree with Snoopy - neither location nor symptoms define the type of MS. My 1st lesion was in the c-spine, with 95% sensory symptoms and a little spasticity, but the DX is RRMS (even though my paresthesia has only spread, and never improved, since it started in Nov. '09).

What kinds of doctor(s) have you seen, and what kinds of tests have been done?

[lemstar]

This is quite cliche, but remember: the one thing you can predict about MS is that it is unpredictable. It presents with a wide range of symptoms, and patterns of symptoms, and everyone is sooo different....

[haps]

Thanks so much for all of your replies. I feel like I need to be really precise in my questions about this topic to get an answer that feels adequate to me, so I will try to ask this from a different angle.

Thank you for the info that a lesion in one place can give you different symptoms. This doesn't really make sense to me, but would explain why if your relapse is a 2-month long numb leg, then the lesion(s) of that attack could go on to give you symptoms in for example your arm weeks or months afterwards. I hope I have understood this correctly.

The main question I want to know but know you can only answer indirectly with more info and shared insight is: am I progressive? I am guessing that progressive MS is harder to diagnose initially.

Basically I have had spans of time (many months) where I have been completely asymptomatic, but this is no longer the case. A few years ago I had blurry vision but this was extremely, extremely slight and I already have bad eyesight so I attributed it to being myopic. No other symptoms. Then a year or two later itchy feet but only for 20 minutes. No other symptoms for nearly a two years. Then a very small numb spot on leg that hasn't gone away but nothing else.

Months later a numb toe but only half a day. Since then--symptoms everyday--hourly, by the minute even-- but "fleeting."

This is apparently "atypical."

Can progressive MS start with intervals of no symptoms in between? Isn't progressive usually initially not sensory/optical?

The numb toe was almost a year and a half ago. I worry that I am getting worse--I would expect the symptoms to slowly get better not worse. Now I feel weakness in my arms more frequently and worsening.

I have had all tests except for a spinal tap (I know what to ask for having read so much on here and elsewhere and all that is left is to repeat everything). All clean except for SSEP which when repeated was normal.

[MarkLavelle]

I'm sorry you're stuck in DX limbo, but worrying whether you have Primary or Secondary Progressive MS strikes me as getting way ahead of yourself if you haven't even been diagnosed with MS yet.

Per the Mayo Clinic:
"PPMS progresses slowly and steadily from its onset. There are no periods of remission and symptoms generally do not decrease in intensity. About 15 percent of people who have MS have PPMS."

"SPMS often develops in people who have relapsing-remitting MS. In SPMS, relapses and partial recoveries occur, but the disability doesn't fade away between cycles. Instead, it progressively worsens until a steady progression of disability replaces the cycles of attacks."

To me, neither one sounds much like what you've described.

I've had paresthesia 24/7 in all 4 limbs for two years now and my neuro still says it's RRMS...

[FL_Jhawk]

Have you had an MIR?

My symptoms started out sort of like yours in that there were slow to come on and sometimes fleeting. I had some numbness/tingling in the wrists for a long while, sometimes hardly noticeable, others very noticeable. Then some sharpish feelings just under the skin in the chest area that would randomly come and go. Then numbness/tingling in the arms and legs, sometimes there for a little bit, sometimes not at, and often variable. It all kind of gradually got worst over a 2 year period (but still mild to where I didn't know if it was just old age or something serious) until I was sick of the chest tingling and went to the hospital, where they found a non-specific loci of demylenation in my brain. After that, I had a more rapid accumulation of symptoms and intensities, to include leg heaviness, fatigue and strange feelings in the face that pretty much stayed, though at varying intensities.

I have questions like you - is it PP or, since I have had some of these feelings for 2 or 3 years now, SP? Fortunately, I seem to be entering a remitting stage stage and have felt better in the last 2 weeks than I have in a month or two. (Or maybe it is due to a change in diet?)

I don't know if people who have the classical lesions progress differently that those who have a "non-specific loci". I am also older, and we older guys generally seem to get the PP kind, which is why I am happy to be seeing some remission.

As is said, there are no clear answers to your questions.