Progression of sx

[steph74]

I have a question about the way sx progress in an exacerbation.  I do not have a dx (MRIs have been clear, but MS specialist says this "looks, feels, and sounds like MS") so I don't know if this is normal or not.

I started having sx about 7 years ago after the birth of my second child.  I investigated things then but it was mostly sensory and with the negative imaging, it didn't seem worth it to continue looking for answers then (they said "complicated migraine").

Well, since February I have been adding new sx, or having a worsening of sx, at what seems like a pretty rapid (though gradual) pace.  I've heard many stories of people just waking up one day and being completely numb or unable to walk, but that's not at all what's happening to me.  I'm very thankful that my sx aren't worse, but they seem to be gradually getting worse instead of better.  This has been going on for 3 months now.

So I know exacerbations can last for pretty variable lengths of time, but is 3 months normal? long? short?  And is it normal to pick up new sx (and see a few disappear) over the course of the flair?  I was under the impression that things would get bad, come to a peak and gradually improve.  Instead I'm seeing things getting worse.

I'm tired of getting new sx!  I wondered if I was just paying "too close" attention, but I'm sure this isn't it because things just pop up out of nowhere sometimes.  I guess when I think about it a few sx have improved in this time (muscle spasms in my feet, twitching in my cheek), but most have stuck around, worsened, and new ones have appeared.  Is this normal for a flair?  Will it ever improve?

Stephanie

[essdipity]

Hey, that was then, this is now. It's perfectly okay to call her and get started on the steroids. This is all a learning process.

ess

[steph74]

Thanks for the feedback.  Definitely over the past years there have been episodes that eventually improved (so much so that I stopped looking for answers for several years).  Discussing things with my dr a few weeks ago, I realized there were other sx that I didn't think were related but probably were (possible MS hug dx in the ER as "inflamed cartiledge" in the ribcage) and these also hung around for a while but later left.

I do remember this happening the first time, too.  My arm was tingling, then my foot, then my leg, my side, my arm was worse, etc.,.  This time it's just been a little more disturbing because it's so much more than sensory (headache, then TN, then muscle cramps, then cognitive issues, then dizziness, then balance problems, then sensory loss (not full numbness)).  It's good to hear that it will get better--I just hope it's soon.  It's also good to know that it's not that unusual for things to set in like this.

Neuro suggested a round of IV steroids a few weeks ago but I didn't think things were bad enough then.  I feel like they are now, but now I feel weird emailing her to say, "can I have steroids now?"  I guess I should have taken her up on the offer at the time.

Stephanie

[essdipity]

If you have MS, the whole thing is a **** shoot. A genuine exacerbation or relapse can last for many months, 5 or 6 in my case, with other stuff joining the fun here or there but leaving in a much shorter time.  Or You can have a genuine exacerbation of one symptom lasting 3 days, period. You can have a steady course of symptoms that are considered a remission, since they had relaxed somewhat before becoming stable but nevertheless there. Then in the midst of that one, you can get a major relapse of totally different symptoms.

So there's no one scenario. If there truly are no remissions, with symptoms arriving constantly but at no predictable rate while the old ones are still at their acute phase, then a progressive form of MS has to be considered.

It's easisest to determine this looking back. In the early days of your symptoms, when you weren't even thinking MS, did you have odd or even painful things happen at least off and on, and at least during a few days? And once this went away, it did go, no matter how long that took? And did at least a month elapse before the next attack?

If these symptoms match MS ones  and you do have it, you are in the RRMS form, which is where the great majority of us are.

For me at least, symptoms come on very slowly. An odd thing about my hearing, a notation that my tongue has been tingling very lightly, for the past week, then a feeling of mild vertigo joins in, then whatever else is giong to happen, all over a period of time. It goes away the same way--Hmm, my tongue's stopped tingling, and so on.

If you really get no time without at least stable symptoms, or hopefully without any at all, this is something you should consult your neuro about. That's what he's there for.

ess