My daughter, Jay, is 18 years old. Since puberty, she has been getting such incredibly perplexing illnesses.
It's almost like "Seasonal Affective Disorder", but it happens during the warmer months and not the winter.
She develops a profound intolerance of heat, to where she literally cannot handle anything near 70 degrees and will start to sob, shake, and vomit uncontrollably. She sometimes becomes hysterical and has visual distortions (not hallucinations) and becomes hyper vigilant and hyper reflexive, and then at other times she develops neurological difficulties where she has tics and develops aphasia, as well as walking difficulties where she says she "cannot feel her hips", and her upper body begins to tip over. In order for her to stay upright, she has to jam her elbow into her hip bone and attempt to move her upper spine to the other side. She can walk like this, but it causes her great pain and looks incredibly awkward. She also had a seizure 2 years ago after spending the day in the sun on the beach.
It should be noted that all of these symptoms appear in correlation to when she is outside and for how long.
She had the most horrible pediatrician who told us it was PMS. But the gyno states that PMS does not last for 4-6 solid months at a time and would not likely cause thing such as aphasia and certainly not the walking problem.
She has had CT Scans, MRIs, X-Rays, all negative. She has been tested for Lupus and Lyme's, and they also came back negative.
Doctors have repeatedly noted that her thyroid is swollen when these symptoms occur, and tested her T4 and TSH levels and all were in the 'normal range'.
She just switched to an adult Primary and he is very interested in figuring out what is wrong. She has a full physical on May 31st, but it would be very helpful to have a few possible things to offer for his consideration.
Jay, also, is incapable of running a fever no matter how sick she is. She has had rivetingly high white counts and confirmed double kidney infection, and her temperature never reached higher than 99.
Jay does have some pre-existing conditions:
Marfan Syndrome, Orthostatic (Postural) Hypotension (We are getting her tested for OI, though)
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