Quote:
Originally Posted by Annie59
Alice md, are you treated at a university hospital? I guess my point is is this a rare doc you found in his own practice? Is your breathing the concern or all body weakness? I am assuming that you just do the one shot that the safety shot that is given before in hospitals for test purposes is not given.
I just called the Valeant Company to see if they would discuss the differences. Boy it is hard as you have to realize they arent gonna say "oh yes your kidneys are gonna have a hard time processing it." She started talking about needing clinical trials and I knew I had lost her. So I back tracked and said changed my wording. I did tell her that the prostigmine doesnt cause the severe cramping and explosive diareah while having a stronger affect on my symptoms.
I am glad for your story as this gives me some info to share with the new neuro I am seeing November 2nd. My current neuro will do no more to treat me. She'll call and listen as my other docs see when she doesnt but treating me with something more it is gonna take a different doc.
Annie59
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No, I am treated by a hematologist who has gradually learned how to manage this illness by reading the medical literature on her own, and happens to be me.
prostigmine was the initial AchE inhibitor uesd in myasthenia. mestinon came later. It was used by Osserman before the era of immunomodulatory treatment in patients with unstable disease. and in many it prevented them from going into full blown crisis.
Nowdays it is mostly being used in the operating room, to reverse the muscle relaxants, being used in surgery.
I received it for the first time in the ICU when I was in crisis, and my excellent response to it saved me from being intubated, according to the head of the ICU.
I don't generally recomend the way my illness is managed, and it is much better if you have a proper neurologist that you can trust, and not less importantly trusts you.