Thanks, Valentine, it's good of you to give me your experience(s). Right now, I recognize the feeling as that of coming off all steroid meds. The exact same thing happened to me last time; I was warned that I'd be feeling than I'd ever felt in my entire life, but didn't know what to expect. I fell totally backwards 7 times in 5 days, no warning. The same thing began happening last evening, and it still didn't tweak until just now. I fell, really fell, banged my head and then my legs, absolutely no warning whatsoever.
This time my electrolytes are being checked every two wks./and I'm showing low levels of sodium in spite of greatly increasing the same. I gather it's the after-effects of coming off the steroid med, but it seems I need that to prevent a recurrence of the Auto-Immune Encephalitis. Oh me, oh my, what a mess!! This is a fairly new diagnosed disease, and I'm fortunate that I've had a diagnosis. Still, it seems the root cause, an electroyte imbalance is also a separate disease (dependent upon what's read)...; in all good fortune I see my newer neurologist a week tomorrow and boy, do I I have some questions for her. Poor woman, at least she's capable (as is my old Doc, but you sure do have to wonder about some of them!) Medicine everywhere is changing at the speed of lightening and the onus is on us to find the answers....I don't know where that leaves most patients, but I know where it leaves me....asking a whole lot of questions, then spending a lot of time on Research. Well, if that's what it takes....at least they're learning something to help others with the same problem and personally, I feel that all education is valuable.
I wish you well and wish I had some easy answers for you. I would just encourage you to keep researching this matter yourself, as ask others in an even better position to do so, for you. You'll get some answer somewhere along the way. Until then, I wish you well, and hope you'll keep checking in with me. I feel pretty battered up this a.m, now it last a few days and will then go the way of the other. Keep on fighting, Valentine, keep of fighting.!!! Yours, Lenora. xoxo.