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Orphan disease

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Old 10-31-2011, 06:30 AM   #1
Join Date: Oct 2011
Location: Midlothian, TX. USA
Posts: 1
djhickson2004 HB User
Orphan disease

Hello, my name is Dawn, and have been diagnosed with a rare neuo disease called "INFLAMATORY SENSORY POLYGANGLIONOPATHY" After 5-6 years of going to Dr., running the same tests, I was sent to the Mayo Clinic in Rochester, MN. After 5 days of testing, this is what they came up with.

Pain was unimaginable, felt like someone was hitting me with a cactus. I could not hardly wear clothes, as the pain was so intense. Carple tunnel was diagnosed in the right hand, and surgery was done. Pain up my right arm still there, so a second attempt was made. No change. Surgery was done on my right shoulder to fix a rotary cuff tear, and still the pain was intense. My neck then was repaired with a tripple fusion. After healing, no change, and then my left hand I could no longer feel, and pain was intense.

Was sent to RA Dr. who diagnosed Fibromyalgia and pain meds were given. Now with no feeling in both hands, I noticed there were no feelings in my feet. Yet the pain still intense....With this disease moving up my legs and arms, a treatment of IV/IG's were started. I went every week for 5 months, and then we started to go to every other week, and now am down to every three weeks.

I am getting the feelings back in my body, but at a very slow pace. I am down to only taking meds 2 times a day, but I tire easy. The more activity I do, the worse the pain.

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