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New to Forum - Looking For Advice

Hi,
this is the first time I have posted here. I am 44 years old and the mother of 2 children. I have only recently learned about lupus and some of it's symptoms. I suffer from photosensitivity, raynauds syndrome, days of extreme fatigue and a red rash across my cheeks and nose. I have had 3 cbc test which showed anemia. About 3 years ago I started with other symptoms. After an unexplained tia the doctors discovered I had some unexplained heart damage and mitral valve prolaspe with regurgitation. I also started having unexplained seizures. Occassionally I have severe joint pain, but I don't think I run a fever. I have numbness and tingling in my arms and legs. Other than the raynauds syndrome and the photosensitivity (i break out in a rash and then the area turns dark), my symptoms are intermittent. I never went to see a doctor, except my ob/gyn, until after the tia. Now it seems like I have a doctor in every field. Not one of my many doctors has ever mentioned the possibility of lupus and I have never been tested for it. I was hoping that someone here on the forum would be able to tell me if this sounds like lupus. After reading about lupus I am wondering if I should ask my gp to test me. Does anyone think my symptoms could be indicative of lupus? If I were to ask for a blood test, should I wait until my symptoms are really bad? Would the blood test be accurate if I were not having a bad day/week/month? I would appreciate any information or advice you could share.
Thank-you,
donna
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replied October 9th, 2003
Active User, very eHealthy
Welcome! It is nice to meet you! I am ladybrannon.

I read briefly through your story...And a couple things come to mind:

1) it cannot hurt to be tested for lupus. However, lupus is diagnosed by a combination of blood tests and symptoms; there is *not* a lupus test, per se.

2) could it be lupus? Sure. Could it be something else? Sure.

3) tias- yes, they do occur in lupus patients. Have you had an mri? If not, I would.

4) you listed having a lot of docs...Do you have a rheumatologist?

5) keep a diary. Be *very* detailed. Take it to your doctors.

6) find out what tests they *have* done and obtain the results. This will help the doctors as well to have *all* your tests in one place.

7) don't stress! It will only make it worse, lupus or no. Smile

8] waiting...No! Will the tests be more *reactive* if you are sick, yes; but not worth waiting to find them that way. If you are diagnosed with lupus, you will find that the doctors will re-run those tests ad naseum (but for your benefit and you will also find that the test results *can* change).

Blood tests?
Ana
sed rate
c reactive protein
c3 and c4
anti-dna
anti-ro
anti-sm

see if any of these have been tested...

We are all here to help in anyway we can...Ask away if you have any more concerns. We will help if we *can.*

hugs,
ladybrannon
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replied October 10th, 2003
Thank-you
Thank-you ladybrannon for taking the time to respond to my post. I don't have a rheumatologist. I was looking through the the copies of some of my blood work and it does not look like any of the tests you suggested have been done. I have an endocrinologist that checks my tsh, t4 and glucose about every 3 months. They have always been normal. I have had an mri. Supposedly that helped rule out ms. I live in a small town and I am not sure we even have a rheumatologist. Perhaps my gp can order the blood work. Thank-you again for your help.
Peace to you,
donna
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