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TheLittleWren

New member
Joined
Apr 4, 2015
Messages
1
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
Oklahoma
Hi all

I'm new here and thought I'd introduce myself. :)

My name is Brooke and I'm 22. For about 4 years now I've been suffering, but we think it's been longer than that. The last two years my more extreme symptoms have come to the surface -- full body pain, horrible joint pain, a fever of 100.8 almost constantly, extreme fatigue to the point where I sleep for 16+ hours for weeks and when I am up I'm dazed and irritable, mouth ulcers making eating and drinking almost unbearable for weeks at a time. There is not a time when I'm not in pain anymore.

I had an ANA of 1:320 with my PCP which is what got me a referral to a Rheumy. I waited 9 months to get into her, and on March 10th (the day after my 22nd birthday!) I was finally able to see her.
She is the most caring doctor I have ever met and she just really understands. She sat down with me and my parents and we spoke for almost 2 hours! I couldn't believe it. She even was interested in my hobbies, my job, and just everything. After that we did labs/blood work & x-rays, all that stuff. The phlebotomist was so caring and he made sure I was comfortable before starting as I have an extreme phobia of needles and blood draws. I felt so at ease which is a feat in itself. Not only that but even the radiologist was incredibly nice! He joked with me and talked to me the whole time, it was very pleasant. I felt like I walked into a new world with how amazing everyone there was. I feel very lucky.

Anyway wow sorry I'm sorry I went on and on, it's just still so surprising and nice to have medical professionals that really care!

I saw her again two weeks after that to find out my test results, x-rays, etc. We are still not sure exactly what I have yet and that's a bit frustrating. She is not ruling out Lupus yet but she is leaning more towards Firbromyalgia and Connective Tissue Disorder. She decided put me on Plaquenil to see if it might help, and I desperately hope it does. I know she wants to help me so much so I am putting my trust in her.

I go back to her in 3 months for more tests, blood work, and to see if the medication is helping. Here's to hoping I can get a definitive diagnosis then or within the year at least!

Sorry if I rambled too much, I really have no one do talk to other than my very caring family, so it all sort of comes out at once when I get the chance! :)
 
Brooke, welcome! Keep posting!
Start by reading my post "starting a daily log book and why it helps". You should have you book ready and documented by you appointment in 3 months. This will help you and your family understand your pain levels, meds and treatment plan.
Read n learn.
 
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