Hey Godgirl,
Glad to hear your new doc is on the case and making the right calls. I'm told that aggressive treatment is required if there is CNS involvement.
I've had CNS involvement for god knows how long. Probably from start 1998. but it didn't really attack my brain severely until about 15 months ago. That was a show stopper.
Still digging out but thank God you haven't had any severe bleeding so far... or so it would seem...
I took the 1000mg / day x 3 days of Solu Medrol to stop the bleeding and that worked. Pred is the only other thing has worked well but I have major side effects from it since taking the solu medrol at that high of a dose.
I take counteractive meds to balance the pred for now until I can get off it and the cytoxan and then I'm going to get a full endocrinology workup.
Treatment is working and I have a life. I can walk and talk and though I'm limited sometimes 2+2=4!
Keep the faith!
Tom
Best wishes,
Tom
----------------------------------
2 years untreated. Dx w/ biopsy - 2000
Tx Plan:
NUTRITION
RESTORATIVE SLEEP
RAISE ANABOLISM
REDUCE ALL INT / EXT STRESSORS
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