I've been lurking here and gaining info for a few months. I want to tell you my heart goes out to each and everyone of you currently fighting this disease. I didn't want to post until I knew if I "belonged" here, but I just have so many questions.
I'm 43. Have been experiencing the following symptoms for the last 2 1/2 years, but they've increased in duration and intensity over the last 3 months. I don't know if any of them are related, but after reading through similar stories, I just want the right diagnosis so I can receive the right treatment and get my life back.
-extreme fatigue (to the point that when I blow dry my hair, I have to stop 5 or 6 times to let my upper arms rest). They feel so weak. Doesn't matter how much sleep I get, I'm so bone-tired.
-hair falling out in clumps
-knee pain (both knees but moreso in my right knee
-i had to have a LSH Hysterectomy in Nov, 2008 because my uterus stopped working (excessive bleeding, clots, pain).
-recently developed a red-rash across both cheeks and nose, with a little redness in the middle of my forehead, too. I think this may be the "butterfly" rash that goes with LUPUS, but it's not as red as online pics I see.
-chronic diarreah for 2 1/2 years (finally diagnosed as IBS)
-had terrible case of shingles in August, 2009
-positively diagnosed with Raynaud's syndrome 2 weeks ago (thank Goodness the doctor was able to see the white, blue, red himself).
-I seem to be having difficulty finding the right words sometimes. I get close, like "example" instead of "x-ray" and am in a fog alot.
-my bp has been normally very low (80/60). Has been steadily rising. Yesterday's reading was 130/89 (despite being on a beta-blocker for heart palpitations).
-I was diagnosed with hypothyroidism 2 years ago, currently on synthroid.
-4 corneal ulcers with iritis since October, 2009
-no appetite, weight loss
of 18#s in 3 months without trying (the one WELCOME symptom,
As of today, I have a strange new symptom to add: My scalp hurts in a particular spot on the left side of my crown. It actually burns and aches, whether I touch it or not, but worse when I do. And kind of a vibrating feeling in the back of my head.
-occassional headaches and neck pain.
I apologize for the length of the list, I just want to make sure I don't forget anything. I've only seen my PCP so far and he did a CBC, liver and kidney function test, ANA, TSH, sed rate and Lyme's disease. ANA negative, Lyme's disease says negative, although I did have positive bands in the test (whatever that means). Sed rate - 23. Only thing on my CBC that was out of normal ranges were low BUN (5mg - reference 7-20 mg); low BUN/creatinine Ratio (6.3 reference 12-20) and low Bilirubin total (.16 mg, reference .2-1.3 mg). TSH was 3.12.
PCP says my test results rule out LUPUS and other auto-immune diseases. He thinks I'm depressed (which I am, but that does not explain all this) Had I not been hanging around here for a few months, I would have believed him and walked away thinking I was nuts. Instead, I asked for a referral to a rheumotogist and endocrinologist. I don't know anything about either one of them.
What should I expect from my appt with rheumy? Will he/she do anymore tests? Are there any tests I should specifically ask for? I'm so in the dark here, even though I know more about AI diseases that I ever did before. I just want someone to hear me.
I want to feel better and be a wife and mother again. Sadly, I feel like I'm in for a long ride.
Thanks so much for listening. I welcome ALL experiences and suggestions.
Post Edited (OBXgirl) : 4/16/2010 10:44:37 AM (GMT-6)