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Questions... would appreciate Input

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Old 10-07-2003, 09:33 AM   #1
Join Date: Oct 2003
Location: Wamego, KS USA
Posts: 1
MsBonnie2 HB User
Unhappy Questions... would appreciate Input

Hello.. also a new posting here. Looking for options.. LOL (Like there ARE any?!?)

Back ground: 5 yrs ago I started having TREMONDOUS pain in my muscles. Pain to where I could barely get up. It was accompanied by headaches/migraines. About that time I was in a car accident and hit my head, (which didn't help). I have been told I was anemic and I have a dx of Ulscerative Colitis. When the pain started in 5 yrs ago I saw several doctors, had 2-3 spinal taps (negative), MRI's of my brain,(I was happy to know i HAVE one) Negative, normal. AND the blood-work up's. They (5 yrs ago) brushed my aches/pains away with FIBROMYALGIA and gave me exercises. My regular MD didn't necessarily agree with the FM DX but it was an Answer.
Today: Since then I have had exasperations/remissions with the aches adn pains. Within the last 6-8 months I have had such muscle cramps I couln't bear. I wanted to die. The worst ones are in my calves and back/neck/shoulders. MRI's are again clean. With the blood work up's my Iron is normal, the anemia has subsided, but.... You guessed it, The High SED rate. It has dropped with in the last few weeks with the Prednisone but it is still at 20 (which is VERY good, compaired to what it was). I am SOOOOO tired I work for 8 hrs and am exhausted. I nap and could sleep all night if allowed. I have FREEZING hands/feet, Headaches that feel like someone is stabbiing me thru the top of my head behind my eyes, and of course the endless muscle cramps which at times make my whole leg/arm jump.

Polymyalgia Rhumitica was the initial dx. I was not satisfied with that because I am a 36yoa W/F who (for which I saw on the net) did not fit the "profile" of the disorder. The doc gave me that becasue of the High SED rate.

My current doc (2nd opinion) has no clue as to what this could be and wants to send me a couple centers one being the MAYO.

Has anyone felt like this... or have any clues. The symptoms stated are some of the most comon/bothersom, but there are others.. too numerous to mention.

Please let me know.

Thanks for the time.


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Old 10-09-2003, 05:24 AM   #2
Join Date: Jul 2003
Posts: 61
nooyawker HB User

Sorry to hear you are feeling so awful. You have quite a mixture of symptoms. The headaches could be something separate from the muscle pain. I think the only thing that is definite is that there is inflammation in your body because of an elevated sed rate. Are you seeing a rheumatologist or a GP? You should be under the care of a rhuem. and I think there are more tests that might pinpoint what is going on. Good luck.

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