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itsmewithms
1 month ago

It would make more sense if you were initially diagnosed RRMS (and initially had attacks and remission) and now have progression without attacks to be classed SPMS as that is what it means. To be PPMS would mean you had an attack and then steady progression since diagnosis. But no matter what we call it we just need to figure out how to deal with it. It may impact what treatment you receive or DMTs are approved.

I don’t see anything in your profile to know much about you like where you are from, your interests or history but the advice above is good. Depending on your country/state and the laws there the allowed treatments vary. For example only in some areas in the US are Cannabis and CBC allowed and only some Drs can prescribe.

I was having a nerve issue last year causing a strange numbing sensation in my thigh and was prescribed Gabapentin for “nerve pain” and some people have said that really helps them. I stayed on my DMT (on Ocrevus currently) to try to hold back MS but this helped with symptoms. I changed from Gaba to Gralise as it is the extended release version and I thought it delivered more evenly. Gaba kind of hits and subsides over a 4 hour period. I am currently an Amantadine as I was having spasms in the afternoon and especially annoying right at bed time. This has stopped those.

So- depending on what your pain is there may be some pharmaceutical help you can get to add to your DMT. I think I also benefit from a good diet, staying hydrated and enough exercise and stretching in a day. Of course avoiding stress is paramount and also so difficult! Especially with relationship issues. So much “for better or worse”, huh? In my case my husband was diagnosed with UC and I stuck with him through that and then many years later I also picked up an auto-immune disease and he has done the same albeit being very critical of my self-care and treatment as he was basically able to “cure himself” but radically changing his diet and strictly holding to it and getting super uber physical condition. He thinks that I should be able to eat away and exercise away MS like he could fix his colon…oh if a brain and a spine were so easy.

So- sometime dealing with his criticism and unfounded optimism is the most stressful thing to deal with ;-0 Setting your course and finding inspiration is my best advice. That could help you find purpose and may help you meet a whole new crowd as well. It seems like every time I volunteer to help with something I believe in I get more out of it than I put in either in something I learn or someone I meet.