Quote:
Originally Posted by AnnieB3
BackwardPawn, Everyone reacts differently to meds. I know of another MGer who also has pain issues and is fine with OxyC. Tramadol, however, is usually NOT good for MGers. It interferes with acetylcholine production.
Have you had your CPK (creatine phosphokinase) checked? How about your vitamin D level? Muscle pain is a classic symptom of a vitamin D deficiency. It sounds like they didn't do enough investigating before they threw a pain med at you! It's always a good idea to find out WHY something is going on before you treat it. 
Going off of those pain meds can cause a rebound in symptoms, so going off has to be done carefully. A pain specialist should work WITH your neurologist to figure out what to do. Problem is that doctors often don't know how to work well together. 
A 2nd opinion is not a bad idea, if you can find an MG expert in your area.
Good luck with figuring out what works for you.
Annie |
I don't think they've checked the CPK levels, but I do know I'm chronically low on Vit D. I was supposed to have the Vit D checked a month ago, but nobody could get blood or start IVs anymore so they had me get a mediport. Now I need to find a lab that can draw blood from it.
My options for neurologists locally are pretty limited, but I think the neurologist at UMD is very good. Locally, there is one specialist that I know of, but I was a patient of his associate for over five years, during which time the MG was completely missed.
The MG was finally diagnosed by a young doctor from a different practice, but only after he sent me for needless surgery without telling the surgeon he suspected MG (which led to a breathing issue). At that point my GP tried to get me in to see the specialist, but I was told I that I already see the senior doctor and couldn't switch. After an argument, I'm now persona non grata at the entire practice (there's really only two major practices in the area). During this time, my pain specialist was telling me that he thought my current diagnosis (ankylosing spondylitis) was wrong and I should be treated by a research hospital. I took his advice and found a neurologist at UMD.
At UMD, they started me on IVIG, PLEX, prednisone, cellcept, and eventually rituxan, but ended up deferring to the pain specialist for the pain meds. I'm anxious to get to a point that I can have the thymectomy, though, and I'm wondering how much those meds are contributing to the MG. Sorry for the really long answer...I've just been going to neurologists and orthopedics since I was 18 and telling them something is wrong, and it took until I was 30 to find out I had MG, so I've been put on all sorts of meds in the meantime that I should never have been on.