Welcome ! & medical mystery again

March 16, 2011

Hi ! I just wanted to say welcome to the group! Even though the

circumstances aren't the greatest I am glad you found us! This is great place to

find more information and just be able to bleed your heart out as times. As I am

going to do after I welcome you to the group. Still's disease is rare and

complicated but you have friends here!

Saw my regular Rheumy this afternoon. This was supposed to be to check my blood

work after being on MTX for 1 month. I've been having hand tremors for awhile

now but it's just getting worse and worse. The doctor thinks it just started

when I started MTX (which is not true) but she took me off of MTX now. Back to

just plaquenil. I told my concern that I may not have Still's Disease and to my

surprise. She said that's why I said " probable " Still's Disease. Well that's not

true either. I have her clinical notes but anyways. She said I don't match the

right blood tests for a diagnosis (mainly being my ferritin) and said you need

to get a second opinion. and you need to go to a larger medical center because

there are tests I want to run you for that I can't being in Bismarck,ND. I

guess she thinks majority of my symptoms are Reynaud's related. But Reynaud's

doesn't cause fever. She also said my Reynauds is bettor as well. But it isn't

it was almost the same! I feel like she doesn't know right from left or is

confusing me with another patient maybe doesn't read her notes b/f she saw me I

don't know.So yeah wow what an appt. 1 extreme to the other. MTX didn't really

make anything bettor anyways. She was gonna put me on a medication to reduce my

daily fevers but I guess my insurance won't cover it because it was a med for

gout and for children with fever issues. So she changed her mind. In the mean

time everything is at stake including my school career and my regular one. I see

the 2nd Rheumatologist on April 12th. I have to get one more referral out of

state. Then I can get to Mayo. I hope by this summer. Then maybe I can be back

on track by Fall!

<3 aka Jalee ..<>..One in a Million <3

<3 Female 25yrs old ..<>.. Mandan, ND <3

<3 Diagnosed with AOSD on 10/20/10 <3

<3 Highest temperature 106 on 10/10/10 <3

<3 Positive RH Factor (no Rheumatoid Arthritis) <3

<3 Positive AMA M2 (no Primary Biliary Cirrhosis)<3

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