The Lupus Forum banner

New Not Yet Diagnosed

381 Views 4 Replies 5 Participants Last post by  LolaLola
Hello Everyone!

I am so glad to find this site. Reading these posts makes me feel I am not alone in my symptoms, and they are NOT all in my head.

Looking back to my childhood, I feel that I may have had symptoms then. I remember having unidentified fevers with aches, rashes, and mouth ulcers. Fevers would pop anytime I was stressed.

About three years ago, I was working for a chiropractor and he tested my WBC, lipid panel, and CRP. My CRP was extremely high. He said that it is a very broad test and didn't test for anything specific.

Two years ago, I was working for an internal medicine (now my doctor), and complained of many aches and pains, but because I had no insurance at the time he didn't do any testing and said that I may have FMS. Every so often, I complained of a rash on my forearm that he said was some kind of eczema or dermatitis. I never connected that the rash was worse in the sun. In addition, I have periodic rash on scalp and forehead with hairloss that gets worse in the sun. I have constant severe dandruff that has not been under control with T-gel shampoo. Also, I have had many sore throats with low-grade fevers that others in my family never catch.

Last week I had to see my doctor about sleep apnea, I made sure I wrote a list of all the symptoms I was having or at in the past. It didn't matter if it was insignificant. I now have insurance. I want a proper diagnosis. I don't want to accept the FMS until tests have been done. FMS is diagnosed by further testing, usually negative testing.

My list included:

1. Pains in at the base of my thumbs, wrists, fingers, elbows.

2. Chest pain with breathing (recent ER visit with pleurisy and in June).

3. Rashes on arm, scalp, and leg; increase with sun exposure. (arm and leg rash not present at visit)

4. Redness on nose and across cheeks and forehead (was not present at visit)

5. Heart palpitations; racing heart of 120 bpm

He said that he was concerned of an autoimmune CTD such as lupus. I will go a get the tests done tomorrow. As much as I don't want to have an autoimmune disease, I would like a diagnosis that doesn't make me feel like it is my head; something a test will show. I know this sounds odd, but dealing with this for years has made me feel that I am going crazy. The doctor did say that even if the tests turn out to be negative, it does not mean that I may not be "brewing" an autoimmune disease, I could be slowly developing a disease and he may have to run the tests more than once.
See less See more
1 - 5 of 5 Posts
Hello there and welcome :)

It sounds like you have a doctor who is listening to you and you are looking into this further which is good.

Keep us posted on how things go for you,

Hope the tests go well for you tomorrow.

Your doctor as Katherine said seems to be listening and hopefully he will help you find answers.

Please let us know how things are going and I hope that you're doing ok!

Take care.

Mrs M:)
See less See more
I'm glad you now have insurance and are being fully investigated for lupus. It definitely sounds like it is warranted in your case as you do have a lot of symptoms that are common in SLE. With any luck, your doctor will call you with results within a week, and you'll have a definite diagnosis. I can very much understand wanting to know what it has been all these years, and to have it be something that can be proven with blood tests/other tests. Once you know what it is, then you can get some treatment that is appropriate and will hopefully help you a lot.

If the test results should come back negative, then it would be especially important to seek out a dermatologist for a biopsy of your rashes. We've had several people here test negative with blood tests but then went on to receive a positive biopsy result for lupus from a skin biopsy.

If lupus becomes a possibility, then it is also important to get regular urinalyses done too.

Welcome to the site and I hope you are safe from the hurricane. Can't help but notice your screen name! Take care.
See less See more
1 - 5 of 5 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.