Subject: Re: Mystery illness; where next?
Forum: The Neurology and Neurosurgery Forum
Topic Area:
Posted by CCF Neuro MD *!* on January 05, 1998 at 21:15:33:
In Reply to: Mystery illness; where next? posted by Lauren on January 04, 1998 at 21:45:47:

: Hi. I am a 36 year old woman who has been searching, unsuccessfully, for a diagnosis (and treatment!) of my vast array of neurological and other symptoms that have
debilitated me for the last 3-1/2 years. My primary symptoms include daily near-fainting and light-headedness episodes (subsesquently diagnosed as neurally mediated hypotension),
severely impaired gastrointestinal motility (I have had Crohn's disease isolated to my colon for 18 years, and tests showed that my motility problems are not Crohn's related),
intermittent "mind fog," memory problems and difficulty concentrating (these have actually improved over the last year), muscle weakness, joint pain, difficulty focusing my eye muscles,
and some fatigue (this was initially my worst problem, but has improved since the onset of this illness). On particularly bad days, I have episodes after eating which consist of burberigmi noises from my stomach, shaking, sweating, and feeling like I'm going to faint. Extreme food intolerance (not Crohn's related, as per my gastroenterologist), heart palpitations (non-sustained ventricular tachycardia and MVP) also are a problem for me.
I recently began experiencing joint pain, but all tests showed nothing. I cannot exercise due to muscle weakness and inability to store glucose for energy use. I lose my hair and eyebrows regularly (although it usually grows back in pretty quickly),
and have seen major changes in the texture and dryness of my hair and skin.

I have been sent from one specialist to another, and have received partial diagnoses (i.e., neurally mediated hypotension, gastroesophageal reflux, slow motility, estrogen deficiencies, test positive for Hashimoto's antibodies), but still do not have a clear answer for my overall condition.
At this point, I feel there is either a single factor affecting multiple systems (i.e., endocrine, neurologial and gastrointestinal systems). However, I have not been able to find a doctor--or team of doctors--who can view my situation in its entirety. Going from specialist to
specialist only provides me with partial diagnoses that provide no clues for treatment. I have been referred to a neurologist who specializes in disorders of the autonomic nervous system, but I am not sure whether this is the most helpful next step. I would appreciate it if you
could please advise what might be a reasonable approach---Thank you.

--Lauren

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