Medical Mystery- CIPD? Nutrient deficiency?
Hello, i'm new here and am in desparate need of ANY advice/insight on my body that is apparently not so happy!!
Here is the saga:
had a baby 8 months ago (was on heparin during pregnancy due to MTHFR)- 6 weeks post partum had an IUD placed- it perforated my uterus which landed me in the hospital getting blood transfusions. Right before I had the IUD put in I had a wicked virus (presume coxasachie/hand foot mouth- temp up to 103, diffuse muscle aches, sores on hands feet and in mouth/throat).
I obviously felt weak from the anemia for a while.. but never seemed to recover.. and in fact got worse.. I realized one day when I looked in the mirror that not only had I lost my baby weight (40lbish) but I looked THIN (i'm thin to begin with) I was 16lbs lighter than I had been in over a decade..
I then realized I had gone from having one bowel movement a day/every other day my whole life to up to 20 a day.. everything was passing right through me.. I kept thinking this would resolve itself- i was too busy with work and 2 kids under 2 to stop and think much about it.. Finally I got so weak I could hardly hold a spoon up, much less hold my kiddos.. I got severe stomach pains and landed in the hospital again - my heart rate wouldn't go below 120 and I was having all these bowel issues.
I went gluten free at that time (i have familyhistory of celiac and lupus).
colonoscopy/endoscopy showed gastritis and esphoagitis otherwise normal
Thats when the wierd neuro stuff started.. the same week I went gluten free and my intestines seemed to get better (from 20 or so bowel movements a day down to 3 or so) I started gaining weight (still eating gluten free).
First it felt like my right knee was "floppy" then I realized I was walking with a waddling gait (my hips feel weak/akward when walking with my feet close together) I also started waking up at night with my right leg and both arms feeling like they were asleep- but painfully so.. ALL Night long every night this happened.then one week later my forearms ACHED and felt really weak.. I started noticing akwardness in my dexterity in both hands and loss of fine motor skills (which I need in my job).
I then had all over muscle weakness where straining to go to the bathroom I barely have muscle for. I also began twitching/fasiculating all over my body- EVERYWHERE! (I have twitched after exercise/walking since pregnant with my daugher - I was ver ill with her- hyperemsis and on heparin 3 years ago, so it was only the all over twitching that was new).
I have loss of function in my thumbs and all tips of my fingers (like jello fingertips. My thumbs just don't work right for 6 weeks now)
The neuropathy/falling asleep/tingling pains/sensations then moved up from my wrists, to my elbows, then to my shoulders and neck..
Now I am feeling like I am having swallowing difficulty (choked twice today), My tip of my tongue is numb and my speech is slurring when saying certain words.. My legs and arms - everything feels as if it has concrete blocks on it
My face is also super fatigued.. If I smile or laugh my facial muscles ache out of fatigue and then tremble if i push them anymore.
I had an EMG that showed diffuse neuropathy (as the neuro said - my sensory and motor function is like that of a 90 year old- i was running and working out before the IUD). The first neuro said maybe CIPD.. but we'll just see what happens.. ugh.. 2nd opinion neuro doesn't raelly know, but is running LYME and Lupus tests on me and started me on lyrica for the neuropathic pain (which is helping me sleep finally)
My MRI head and neck - normal, labs all normal so far- including heavy metal, B12, chemistries , thyroid. (my b6 was twice the upper limit of normal- I stopped all supplements at that time, but things continue to worsen). My first ANA was 1:80 and abnormally speckled, 2nd ANA was normal. Stool studies thus far normal.
I need help- I am now really freaked out about the tongue/speech.swallowing issue. My neuro just wants to wait for the lyme and lupus tests to come back, but I'm getting nervous.. I don't want to loose my speech .
ANY ideas, would be GREATLY appreciated.. I don't know what to do from here!
Thanks in advance!