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Thanks for your input!

1.) I have all my labs. I actually have ALL my paperwork, which I've been hauling around to show doctors. I've only been to the doctor once since Mayo (August 2010) and that was when I was told that she didn't agree with Mayo. No blood work was done. I've been sick for almost four years and none of the blood work has shown anything specifically, but I have gotten worse with symptoms. (The joint pain spread, bone pain, chest pain, gallbladder stopped working, heart beat is now very fast and ER just assumed it was due to UCTD, I itch all over sometimes, is that related to this?)

2.) Mayo does not recommend doctors. I asked them to and they wouldn't, so I just went to a new primary (I've moved four hours away from home, so I had to get a new doctor.) and the primary set me up with the rheumie.

3.) The low D was about 2 years ago and my levels have been fine since, but I will check into with the doctors.

4.) I've had extensive X-Rays checking for joint erosion and I have none. I did have a radioactive isotope bone test done very early in the disease (maybe 3-4 months in) and it showed inflammation in hands and SI joints.

5.) I tried the generic (hydroxychloroquine) for six weeks with the first rheumatologist and then tried the same again for about a year with the second rheumatologists. I didn't have trouble with stomach problems before the medication, but I have since developed issues.

I feel worse after being in the sun. It seems to make everything hurt more. I also think my eyes are more sensitive to the sun now. Is that normal for this type of thing or is that just me? I only have the scleroderma rash. I've had it biopsied twice. The first time, done by my primary, wasn't deep enough to differentiate between the two, but was thought to be either Lupus or Lyme Disease. (I was tested for Lyme and it was negative.) The second time I was seen by a dermatologist and infectious disease doctor. He looked at my blood work over the past couple years and felt that it clearly showed an autoimmune disease. He diagnosed the rash as morphea. Mayo looked at the biopsy slides also and their dermatologists were stumped. They couldn't decide if it was morphea or scleroderma. They actually called the rash "a mystery, and that's rare here at Mayo". They took pictures of my rash to analyze and have on record. The rheumatologist I saw most recently agreed that I might have scleroderma, but didn't do anything about it. At first the rash was just on my right arm, but then it showed up on the lower left leg and it now covers all of the inside and outside of the leg.

Thanks for all your help! If I can't get diagnosed yet I can at least have a sympathetic ear!





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