Question about RRMS vs PPMS

[ams715]

I am still having tests run (LP tomorrow) to determine the cause of my symptoms.  I have two "unspecific" lesions on my c-spine.  But my question is this. My symptoms (tingling, numbness and L'hermittes) have steadily increased since July.   There has been no single "incident" to speak of.  Does that point more towards PPMS or does RRMS sometimes start this way?

[daisy.girl]

I have a question about this too. I was dx in Jan of this year....I have never gotten any better, in fact, in many ways I am worse. Increased spasticity in my legs, more issues with my bladder.

Does it mean that I could have PPMS and not RRMS?? How does the neuro make that determination?

[HVAC]

Lie down for the rest of the day and drinks lots of caffine. The LP is not as bad as you imagine it.

Good Luck.

Alex

[ams715]

Thanks everyone. I'm really not looking forward to the LP tomorrow!  But it's great talking to people who really know what MS is all about. Thanks so much.

[HVAC]

It usually takes a year after diagnosis of MS for Neurologists to determine if you have PPMS. PPMS is usually very subtle you notice you can't jog, then it is a little harder to walk, etc. Between 5%- 10% of those with MS have PPMS. The Neurologist will often not diagnose people with it because the DMDs such as Copaxone and the Interferons are not FDA approved for PPMS because they failed to work for PPMS in the drug studies so insurance will often not cover them.  If you are diagnosed with RRMS at first it will not hurt because there is little treatment for PPMS. When I was diagnosed with PPMS I was taken off my Copaxone and told basically I would be treated for symptoms only. Since my PPMS diagnosis Fingolimod a new drug for progression has come on the scene. It is in trials for PPMS. I have had PMMS for over forty years and feel the progression is slow so I do not want to take Fingolimid because of the adverse reactions.

Basically at the beginning of diagnosis you do not need to worry about what kind of MS you have. Often it is not even clear to the doctors what catagory anyone is in. My case is just text book. PPMS is a bit more depressing since there is less to be done. I knew I had it but when I was told I felt like I was going down hill with no brakes. Since then I have adjusted. No two cases of MS are the same no one can say how you will progress and how fast.

Alex

[COBOB]

Not really.  If the symptoms continue to increase past one year, and you meet the rest of the the Revised McDonald Criteria, yes.  But you could go for 9 or 10 months and level out.  That would then be an attack and the progression would be less than one year, and that would go against PPMS.

Bob