- CASE FILE
For 2 yrs I've had w L leg weakness, bilateral foot parasthesias, 30 lb wt loss, many joint inflammations, hyponatremia.15 docs-no diag yet.
ABOUT THIS CASE FILE
Starting in 2017 I developed L quad weakness and R foot paresthesia. After seeing 15 specialists including neurologists, rheumatologistsists, tick-borne disease and ortho/neurosurgereons, I had a discectomy/fusion of L4-5 in 9/18 but symptoms eventually became worse post-op and I'm back at square one. I now have bilateral foot and lower leg paresthesias, muscle cramping, L quad weakness with atrophy, extreme fatigue that worsens as the day progresses, loss of appetite with 30lb wt loss in 1 year and random eczema/rashes. CPK has been elevated x1.5 yrs(recently 422), CRP and LDH occasionally elevated, and recent ANCA panel showed PR3 was 2000 (but after 12 days of titrating 40mg cortisone daily it returned to normal and CPK lowered to 178. Now it's back in high 300s. Also cycling in/out of hyponatremia for no apparent reason (sodium 133 and CL 96). Skin always dry/flaking/itching since back surgery. Continue with lack of appetite and nausea when trying to eat.
The many bouts of severe joint and/or muscle inflammation (some of which had me in the ED due to pec/chest pain to r/o HA or pulmonary blood clot but was neither) have no pattern but symptoms stay for months. I now have some growing, painful bony protusions on collar bone and proximal thumb and thinking maybe Paget's, a myositis or Myotonic dystrophy but the neurologist didn't agree and refused to do genetic testing. I am trying to therapeutically walk daily but am gradually losing my ability.
When I first had to go on medical leave I was only out 2.5 wks and my healthcare employer terminated me for not providing a specific return date. I am unemployed with no income, undiagnosed and losing hope while suffering daily with all of these symptoms. My quality of life is severely affected as I'm very limited with social and recreational activities, and I feel like Chasing the Cure is my only chance for a non-idiopathic diagnosis and treatment to save me. Thank you to all in advance for any thoughts you feel might help me get my life back.