Last year I had a particularly bad time of it. Mentally fit but physically bad, which suddenly seemed to get worse. I emailed my community MS team who bought up what I had said to the neurologist who diagnosed me initially. I asked the question “Can people with primary MS relapse and if so, will I go onto remission?” I have just been to see him and he has requested another MRI to see what scarring, plaques and inflations I have now. He has talk3d about 3 drugs now available to assist with primary MS, bit has also warned that to have the one he thinks will b3 right for me, we will have to do some creative book keeping, as i will neex to be able to walk 25ft. Has anyone experience of any of these newer drugs? What did you have to prove to have them prescribed? Please anything will be useful. I am entirely out of the loop since 2015!
Hello. I’m not sure what drugs you’ve been offered. I’m not on any as I worry about side effects.
I think I’m doing ok despite the condition. I walked for a bit when I was at work but retirement saw that diminish as the walking was actually dangerous. All I can offer is advice about acceptance and attitude. My determination to remain mobile now involves an electric wheelchair. I know I have limitations and am open to ideas but the acceptance has helped be more creative about coping with life.
All the best, Steve
Hi. I too am on no medication for MS but take quite a lot for my symptoms. I haven’t been offered any potential treatments. As for going into remission, I haven’t experienced that!! What does happen is that some of my symptoms e.g. pain or fatigue can get much worse for a while (days or weeks) and then ease off a bit again. I have not been symptom free as far back as I can remember. From what I understand from my neurologist and nurse is that this is the norm for ppms. If you’ve been offered a drug to treat ms I’d be interested to hear how you get on with it please. Sorry I’m no help otherwise. Cath