- CASE FILE
About 6 years ago I started aching from head to toe like I had just run a decathalon. Now it has progressed to severe cramping head to toe.
ABOUT THIS CASE FILE
I have been told I have the following: HIV, degenerative spine disease, neuromyotonia, psoriasis, probably others I've forgotten. It started about 6 years ago with just overall body stiffness. Then the cramps started. I lost my job because I could not perform my duties as a property manager. Any type of stress, whether it be physical or mental induces cramps. Especially when I lie down. This makes is impossible to get a full nights sleep. I wake about every two hours with severe cramps, in my legs, sometimes in my torso, my jaw, just about any part of my body. I am now on disability. All I can do is sit in my room 24/7. I can drive about 2 miles to the pharmacy before that much activity starts to cause my body to cramp. I tried IVIG for 4 sessions and didn't notice a difference. My neurologist is trying Rituxan now. I had my first round in January and trying to schedule my next round (once a week for four weeks, every six months). But I am having trouble with insurance because neuromyotonia is not listed as an FDA use for Rituxan and it is very expensive, with nurses and everything about $16k per dose. I need to switch my insurance because I can't afford my COBRA anymore. I am a 50 year old, previously very active person. Now I can't even walk down my driveway to get the mail. I have to use a scooter. I used to be a ski instructor at Park City Utah. I used to get compliments on my legs and how good they looked. Now they look like they came from a concentration camp (I apologize, did not mean to offend any body with that comment, just the best description). I don't want to live the rest of my life staring out my bedroom window. I love to work and be active. Right before and at the beginning I was walking 30,000 steps a day (I was a facility manager). Then it got to the point any stress would essentially lock my legs in cramp and cramp painfully in my torso. Lately my jaw has been cramping shut. It is scary when it happens. I can't open my mouth with a crowbar. I have been bitting my tongue these last couple weeks which is a new symptom (most likely because of the jaw cramps. I went to the Mayo Clinic in Rochester for two weeks, they did the same tests as Johns Hopkins (where my neurologist is) all with the same results . . . . . "inconclusive". My bloodwork shows I should be perfectly healthy. My HIV has been in check since I was first diagnosed about 25 years ago. Always been undetectable (except the first test) with 1200 - 1500 in T cells. I have seen about 17 doctors so far. I just keep getting passed from one to the next. My neurologist, Dr. Andrea Corse at JHH has stuck with me as has my PCP who is an infection disease doctor due to my HIV.