treatments for PPMS

[Bodilli]

I HAVE TOLD THAT THERE ARE NO TRATMENTS FOR PPMS BECAUSE THIS FORM OF MS IS MAINLY A PROGRESSIVE FORM AND MOST TREATMENTS ADDRESS THE RELASPING ASPECT. I HAVE BEEN TOLD THAT THE ONLY REAL WAY OF TREATING IS SYMPTOM ONLY IS THIS TRUE? I DO FEEL THAT MY DIAGNOSIS WAS CORRECT BUT I DO HAVE PERIODS THAT SEEM MORE DISABLING THEN OTHERS WITH A STEADY BASELINE OF SYMPTOMS. FOR EXAMPLE I GET HEAD TREMMORS, MOSTLY THEY ARE MILD TO MODERATE AND DONT EFFECT ME THAT BADLY BUT OTHER TIMES WHEN I AM IN A BAD STRETCH I WILL AWAKE SHAKING PRETTY BADLY AND HAVE HAD CONCERNs ABOUT CONVULSIONS.



ALSO I HAVE A STEADY PAIN LEVEL I WOULD CALL A 5 OF 1-10. BUT THEN I FLAIR UP WITH WHAT I HAVE BEEN TOLD IS SACROILLITIS (TRIGGERED BY THE MS) AND CAN NOT STANDUP AND MY PAIN LEVEL GOES THROUGH THE ROOF. MY QUESTION IS I WOULD THINK THAT IT MY BASE LINE IS MANAGEABLE THEN WOULDN'T RELASPING DRUGS BE BENIFICIAL FOR ME? TO HELP ME MORE QUICKLY RETURN TO MY BASE? IS THE ONLY ANSWER PAIN KILLERS, MUSCLE RELAXERS, DEPRESSION MEDICATION YUCK?

[Bodilli]

Thank you I will take your advice and talk to my Neurologist about it!







Bob

[Bodilli]

Thank you Alex I will mention Copaxone to my Neurologist when I see him soon. And thank you for your story it gives me hope that you have lived 40 years with PPMS and have not lost your ability to walk. I will keep you in my thoughts and prayers with your latest battle.




Bob

[Bodilli]

Thank you for your input. I am seeing my neurologist soon and will discuss some other drugs with him.




Thank you
Bob

[Lulu54]

My neuro says its only common sense to throw what he can at eveyrone with MS, regardless of what type MS they may have.  It might very well do something beneficial to slow the disease.  The symptom drugs are totally different and those are available to anyone who needs them, regardless of what type of MS they may have. ~Laura

[HVAC]

Many Neurologists will try the disease modifying drugs on PPMS. I did copaxone with PPMS. I ended up with Cancer so I am on chemo so I take nothing but symptom relief for MS now. I have had PPMS for over 40 years. I am still ambulatory. I ride horses for therapy and walk dogs.

Alex

[SarahL2491]

I understand they are starting to use Tysabri for that type, no harm done and worth a try.