Well, I’m finally getting tested for ehlers-danlos! Excited to know if that’s the cause of my Zebra self. My genetic counselor is also running another type of panel on me. He said my symptoms remind him of….Dystonia. F*ck. (scuse my language). I had run into that word before and felt it was reminiscent but wasn’t fully on board due to the literature not quite matching up with my symptoms. So I joined a Facebook group for patient experiences and sure as shit, it fits. My son is also showing those same signs. (disgruntled angry mom about this).
Those crazy vibrations? Well, it seems common in this group. My muscles are also pretty tight for being on bed rest most of the day. I should have atrophy, I don’t. Guess those vibrations are keeping my muscles from completely relaxing so I’m exercising without intent, so it seems. I’m really nervous about this one as reading about it sucks. I don’t think there is any family history of this. It also might not show in my genes so if it doesn’t, off to a movement disorder specialist to get checked out. Knowing that my son is exhibiting the same signs, I feel strongly, it’s in my genes.
I got my periodic paralysis panel back and they found a VUS. Variant of Unknown significance. Typically they don’t allow free family testing for a VUS but they are studying this condition and since the frequency was non-existent, they are testing my family. My genetic counselor said the lower the frequency, the higher the odds for a pathogenic mutation. Makes sense.
So maybe soon, I’ll have answers as to why my body has fallen apart and why I am not so normal. Maybe the physical aspect of the military along with the exposures caused it to express? I never had signs of anything during my childhood. Then maybe the constant physical therapy kept triggering it? I guess that part doesn’t make sense as obviously it was triggered to cause physical therapy. Still learning. Still wanting to know WHY I was so healthy before I joined the military and yet so ill upon leaving it. Why!? No one else in my family seems to suffer like I do. They’re all healthy in my direct family line. Vaccine reactions to the onslaught of toxic goo given to me all at once? My body doesn’t process things normally. Anthrax vaccine? Some mystery experiment done on me?
I have so many medical conditions it makes my head spin. It’s also extremely embarrassing to list them all. ME/CFS, Fibro, Migraines, tension headaches, IC, UC, IBS, POTS, autonomic issues, mild emphysema, possible HKPP (I’m almost certain I have this), and others…
The wait sucks. I’m waiting. Will update…. soon(?).