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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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I try to get an appointment with a new neuro today (I haven't seen my prior neuro for >3 years and he is not taking new patients (which I would be because it has been so long))---and was told that I don't have a neurological problem and they won't even see me
I do have a strong history of depression and went to a major medical center where they said they thought part of my problems were due to conversion disorder (i.e. pysch), but that it was a diagnosis of exclusion. My psychaitrist, on the other hand disagrees. While many of my symptoms are sensory, I do have several "hard" neurological signs (hyperreflexia bitlaterally and a positive Hoffman sign) and I've had numerous swallowing studies which show intermittant penetration, most likely organic (i.e. neurological, not psychological) and I do get pretty routine lung infections, which my pulmonologist says are do to microaspiration. I'm on mesitnon b/c tit seems to help my swallowing. I can't tolerate heat at all (>85 degrees I'm inside with AC)---I just get majorly fatigued. I do have a history of a C5-7 fusion for cord compression, which I assume is stable. I realize that stress my play a significant role; and maybe it is all "conversion" disorder (it is hard to get any info on what to do about that though), given the fact that I was told it was psych when it turned out to be cord compression, resulting in a fusion and drastic improvement of strength on the left, makes me recultant to believe (especially when not all the docs agree) without checking things out I've had increasing sensory problems on the left and increasing mild urinary incontinence (just a little leakage and I pee every hour---this could be due to having 3 kids--stress incontinance)---God forbid if I cough or laugh I've done fairly well ignoring things the last couple of years and things have been pretty stable (despite routine lung infections and problems swallowing liquids) I am now very cynical of neurologists---I can't even get to see one b/c of my histroy of depression and possible conversion syndrome at the very least I think they should evaluate my cervial fusion and the other sites where I had narrowing without frank compression I guess once you cry wolf (intertional or not) they never want to see you again PS-My primary care is ordering the MR (assuming they don't cancel b/c the neuro office said they will relay their "assessment" to my PCP.) The Medical System SUCKS ![]() |
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