18 yr old suffering for years with EVERY symptom of Dysautonomia. Finally received diagnosis a few months ago at UT Southwestern Autonomic Clinic in Dallas of POTS and Autonomic Neuropathy (although previous tilt test showed Orthostatic Hypotension, not POTS). On Mestinon which has eliminated the 15-20 x's a day of vision blackouts but has not helped any other symptoms and Robinul for the constant nausea and stomach issues. Robinul is helping the nausea but stomach issue are debilitating (such as diarrhea an weight loss and she only weighs 115 lbs to start with).
My frustration is that the doctor in Dallas seems to think that we are done and says she is sorry that she is feeling so bad. Everything that I read on Autonomic Neuropathy lists possible causes and states that the cause must be treated for the nerves to have any chance of regenerating. We have no cause. She has been tested over and over for every possible culprit. Her local doctor has even tested odd rare possiblities. I really don't think that anything has been overlooked.
But she gets progressively worse weekly. Example: Issues over the last 4 weeks.
Severe urinary tract infection
Severe respiratory infection
Several days with heavy arms and legs to point can't function normally
Going on 3 weeks now with diarrhea and loss a clothing size
Had swollen glands for 2 days
Random transient low grade fever
Has to take a break to walk across campus because heart starts to hurt
Her heart has been tested extensively. Just last week had Cardiolite Stress test and had 2 previous Echos. Echo did show Mild Mitral Valve regurgitation, Mild tricuspid regurgitation, & Trivial Pulmonary insufficency. All of which is repeatedly stated as nothing to be concerned with, however I noted that many with Autonomic problems also have this.
What happens if no cause is found? Do her autonomic nerves keep deteriating until she can't function?
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