@DocLobster 

EditedLast reply

DocLobster

PIRA (Progression Independent of Relapse Activity)

Hello. Quick questions. Long Post. Sorry. This is my first time posting here. Q1: Can anyone tell me what’s up with PIRA (or Smoldering MS as it’s referred to in some literature). Q2: Has anyone with long term RR MS (I was diagnosed 35 years ago) experienced progression as they age (I’m 62 in a couple of weeks). Background I was diagnosed in 1991 with minor numbness in my facial muscles. 1st relapse in 2014 accompanied with weakness and spasicity in the legs and bowel/bladder issues. Almost full remission but with symptoms returning over the past few years. The past few months leave me limping along with a cane and I am formally retiring from my job next month. Copaxone and generic Glatrimir for the past 10 years. I read articles and listened to recent YouTube or podcasts by Beaber, Boster, Hawley, Prof G, and others; and read a number of books but not many published recently. I’m at a loss to understand where the medical world is regarding progression of existing symptoms. A few years ago my neurologist suggested I read: The topographical model of multiple sclerosis at: https://www.neurology.org/doi/10.1212/NXI.0000000000000279 I found this conceptual theory interesting but not so helpful for understanding exactly what is my physical and cognitive reserve and how I can maintain a full level of fluid in my tank. Can anyone enlighten me about PIRA and smoldering MS??
@Laure

Listen to it, it is real stuff, but I always God to support me and I stay on diet so I can be mobile till my old age and be able to do whatever I want to do. All those drugs or infusion we are taking are just bandages we put on a wounb that are still bleeding.