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Old 11-12-2015, 03:34 PM #1
Ponywoman Ponywoman is offline
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Join Date: Nov 2015
Location: Olathe, KS
Posts: 4
8 yr Member
Ponywoman Ponywoman is offline
New Member
 
Join Date: Nov 2015
Location: Olathe, KS
Posts: 4
8 yr Member
Default Hair Loss Complete... with Myasthenia Gravis!

Hello, I'm new on this site as my past immune/severe disease problems have been 45 yrs of Rheumatoid Arthritis + 1 yr of Collagenous Colitis. Despite extreme crippling, I still managed to enjoy life fully with my husband of 50 yrs on our Appaloosa horse farm. But I suddenly was hit with 100% of MG symptoms in June of 2015 & was in a wheelchair within days. I've spent all summer trying to get a definitive diagnosis because I am sero-negative. I am starting with a new neuromuscular doctor at Ks University Med Center but I'm feeling that she's also somewhat stumped by my muscles that cause me to struggle so hard to walk, I sweat heavily & feel I'm walking through quick sand while running marathons! (I also had the inability to swallow or chew with 1 eye closing when reading or watching TV until I upped my prednisone to 25-35mg daily. The muscle failure crept into my arms & lower legs but I've improved enough to walk on my own-- with difficulty).

My question is: In June I had waist long dark brown hair although I'm 68. But in the past 2 months, 90% of my hair has fallen out & within a week, it will all be gone at the rate its coming out. There is some small grey hairs coming in so I'm not bald but I'm wondering if this is common with MG? I also got a petechiae type rash spreading over my failing leg muscles which traveled up my groin, belly sides & especially covered the glute muscles on my hips. My muscles atrophied over night & "all" my skin fell off on my legs & sides of my hip muscles. I originally suspected a toxic drug reaction so quit several medications including the sulfer drugs I was taking for arthritis & colitis. But my skin continued to flake off daily & is only now recovering the past two weeks.

I wasted all summer with my rheumatologist who said she'd help me but then got angry with me when she couldn't figure it out. The neurologists are puzzled. Loss of my over 2' long dark hair probably seems silly to most of you but now I've lost all my self esteem & although I remained a sunny person, struggling to overcome my disease problems, this hair loss is the proverbial camel's straw that is sinking me into depression. I note that I didn't go to a dermatologist as it takes months to get an appointment & she'd probably say the hair loss is an effect of a severe illness which causes hair loss typically 2-4 months later. I haven't gotten any of my other numerous doctors to even look at the rash or exfoliating skin when I mentioned it. I'm also very low in iron (always am) which can be a problem for hair, I've read.

Any one else out there with hair & skin problems with Myasthenia Gravis?
Thanks so much to everyone who posts, Marsha/ponywoman
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