Are there any primary progressives out there besides me? Are you on Avonex? If not Avonex, what are you taking? How are you feeling? Is your progression happening fast? Let me know. Got any advice - all is welcome.
My Neurologist has told me she thinks I have a progressive form of MS probably affecting my spine. When I was diagnosed it was R/R and I took Avonex injections but stopped that as the side effects were unbearable. I do not take anything now. I have a balance problem and fatigue. I have lived with MS for over 20 years. Still able to do most everything with the help and support of my husband. I use a walker around the house and have a mobility scooter for any lengthy trips.
Good luck to you.
Welcome to the "Forgotten" M.S.ers. I too am Primary Progressive I was DX'd 3 years ago and unfortunatley No treatments are available for the progressive stage of the disease. My Neuro has advised that the CARB's will be of no use and will not waste time prescribing them to any Progressive patients. It is a cold hard fact that the advice we get is" Your Progressive there are no treatments ,Learn to deal with it" .We do not see a lot of press on the studies that may be going on as you will find it is mostly RRMS that gets the press .Drug companies seem to direct all their energy's towards those that they can sell the medications to, It is a business and a big Money maker as are most chronical diseases. Yes I am a little bitter and am of the belief that as long as they can sell maintenance drugs the CURE will always be just on the Future.
I understand exactly how you feel. Seems any medications out there for the progressive people are so full of side effects that there is no way we would want to try them. As with your Neuro, mine doesn't offer much hope on treatment. I do feel that after living wiht MS for over 20 years, I surely can continue on. Have to see my grandchildren grown and with kids of their own. The youngest being 9 months I hope to get at least another 25 to 30 years out of life.
I honestly don't know what I am. Neuro wants to give definitive dx but I don't have a R/R component for the clinical piece. The only thing I can bring up at next visit is "sciatica" that has been on again off again for several years, since early 30's (I'm 47 now). I've wondered how, if R/R is required for dx and my current symptoms are not remitting, can they make a dx?
Thank you so much for responding. I don't know anyone with MS, especially primary progressives. I am on Avonex and I know the side effects are terrible - but I hoping somehow this will help. I was 55 when I was dx but I guess I had it much longer. I am trying weight lifting to help and am on Xanax for dizziness. I am still working as a teacher and using like a cart to push around so I can get around at school. Do you have any tips - you sound like you look at life in a positive manner - what is your secret? Thanks.
I think my curiosity(maybe you would call it being nosy--ha ha) about what is or might be going on has kept me going. That and a wonderful family that gets me out of my blues stage. I know it's hard at times to keep pushing, but don't let MS get the upper hand. I use a walker to help with my balance problem and am debating whether to go see my orthopedic doctor about the arthritis in my knees. That could be part of my propblem of not being able to be up on my feet for any length of time.
Keep on plugging.
I'm sorry you have PPMS. I'm glad you found this support group. MS is tough enough to deal with, but feeling alone makes it even worse.
Like Trueoutlaw29 I have to wonder whether it is worth all of the terrible side effects to stay on Avonex. My daughter's Mayo neuro and everything I've read has said it doesn't help with PP. But I can understand your being willing to try anything that might help. It's good you're a fighter! That will help you lots.