My daughter (14) and I have what are now being called "related & rare" issues. Because of multi-system symptoms/involvement, we go from specialist to specialist incurring copays I cannot afford, and leave no better than we came. Her situation became evident and began declining right after turning 10 years old. I have had signs/symptoms for quite some time, but began declining much faster over the last 2 years (especially the last 7 months). Some of the most obvious things we are both experiencing are:
*"seizures" (possible, but not typical and neurologists not 100% sure if seizure is right
label -EEGs abnormal on left side of brain)
*EXCESSIVE fatigue/malaise (Yes, we've been to sleep specialists also. I was diagnosed
with narcolepsy based on excessive daytime sleepiness alone.
Both of us are diagnosed with RLS.)
*Active autoimmune (ANA 1:640, but all specific markers tested are neg.)
*GERD/other gastrointestinal issues (possible Crohns)
*vit. D def.
*irregular menstrual cycles (I've been labeled PCOS, daughter hasn't been to endo.)
*selective muscle weakness (esp. with arms above head)
*changes in appetite/taste/vision
*hair loss (I've lost more than 1/2 my hair, confirmed by derm., but no explanation)
*memory/word recall problems
*inconsistent/varying BP, pulse, temp. (lately her temp dips to 92 in controlled env.)
*intolerance to heat (and now cold)
*drooling/slurred speech/etc. at times
*urinary and bowel incontinence (episodic, not consistently)
*increasing intolerance to exercise (I couldn't walk on treadmill for 2 min. without reaching
target heart rate. Heart (R & L) cath. "okay".)
Daughter alone: panhypogammaglobulinemia, scoliosis,
Me alone: multi-nodular goiter, gall bladder disease, likely Crohn's, PCOS, B-12 deficiency
I'm sure I'm leaving out lots, but also sure this is too much for anyone to read anyway. I am 35, grew up bailing hay and feeling quite strong, always top of my class. This is definitely a HUGE change from "normal" for me. My mother had similar complaints, but died too young with no one quite understanding anything but "gastric cancer". My daughter and I are both actively seeing numerous specialists at highly ranked institutions. Any obvious treatments have been tried or are being followed (i.e. B-12 and D def. are being actively treated although neuropathies progress, etc.)
Any guidance or insight would be helpful. At this point, we are to where even the doctors don't totally relate to what we're experiencing. I'm sure someone out there has been through all this before (or knows someone who has)...
Thank you if you actually took the time to read this rambling post. :)
drowning in doctors appointments
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