I'm pretty sure that PPMS takes a good while to be sure of. From what I've read, patients who otherwise meet MS diagnositic criteria generally must be followed for a year or more to determine whether any real remissions occur. It is not likely to be mistaken for RRMS if no remissions are seen.
If someone diagnosed as Secondary Progressive later has a clear relapse on top of the progression, that would be the time to change the diagnosis to PR, as you say. In fact, I don't know of another way that progressive forms can change.
Of course progressive forms can stop progressing, and that's what we hope they'll do, but the disease status doesn't change.
This is all very complicated to figure out, isn't it? But at the moment, it's important to be sure only whether or not the diagnosis is RR, because that's whom the DMDs are aimed at. If we get effective meds for progressive forms, then the question will need to be answered more quickly.
PPMS in my opinion take awhile longer to Dx as your symptoms do not go completely away and you have symptoms all the time, good days and bad days. I heard that steroids will not help with certain symptoms with PPMS but not sure of this answer either..
boy, I feel dumb when I can't answer all these questions, guess we need more experts to jump in here..
I think it's difficult for the Neuro to come up with a definite Dx of PPMS or SPMS or PRMS.. it would take time and alot of information.
I have PPMS. You do not have relapses it is usually a subtle and gradual change. For example one day you notice you do not run as fast as you used to. Then months or years down the road you notice you can walk long distances but it is harder. There are very few brain lesions. Most lesions are in the spine. Walking is usually affected. Optic Neuritis as beginning symptom is rare. It is usually diagnosed in folks who MS becomes apparent in their 40's. In my case I did not notice anything was wrong it was my Primary Care Doctor who noticed when I flunked a neurological exam she gave me with my yearly exam.
They do not give PPMS steroids usually since we do not have flairs or attacks or relapses.
It does take a year or more to be diagnosed since a neurologist has to see the pattern.
All my brain MRIs over the years are almost identical. I only have a couple of lesions. This time no enhancing.
The drag of PPMS is the DMDs do not work for it so there is nothing on the market to slow the progession. There are some drug studies but less than RRMS since PPMS is 10% of the MS population.
With any kind of MS even RRMS if your symptoms are from nerve damage steroids will not help. There are two things working in MS inflammation which comes and goes and nerve damage. Steroids are used in medicine to decrease inflammation they are a temporary fix.
There is not much that can be done for numbness. For nerve pain there are medications they can use Trileptol, Nerontin, Lyrica, and others.
You ask if I think you may have PPMS because a course of steroids has not worked for you.
First and foremost, I'm not a doctor. So what I say has to be based on what I've learned here and elsewhere. My 'opinion' has no medical value.
Having said that, though, I think that no one can zero in on PPMS based on this one factor. It can take weeks for steroids to work, and I don't know how long it's been for you. What's much more important is whether you've had clear relapses and remissions. Remissions don't have to mean no symptoms :-( but they do mean at least stabilization with nothing new happening.
Sometimes steroids don't work because the treatment wasn't long enough or with powerful enough doses. Sometimes the symptoms aren't caused by inflamation (inflammation). A lot of things can happen, and really, only time will tell.
Please just keep hanging in there. I hope you're getting good neuro treatment.
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