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supposedlynotsick
01-22-2008, 10:38 PM
I have been reading on the board for a couple of days. I am 36 years old. Like other people here I am very frustrated. I have been sick with something for three years. It started out feeling like a stomach virus and has progressed from there. I was a teacher but had to quit when I got sick. I already have and have had for years endometriosis, migraines, and IBS. During surgery for endometriosis (hoping that might fix the problem), they found a malignant carcinoid tumor on my appendix which is very rare.
Since then I have still been very sick. I have extreme fatigue, a fever and chills several times every single day, cold hands and feet, and nausea when I eat anything with any fat in it. I also have moving joint pain along with the pain in my ribs that is intermittent.
I have read a lot of books on autoimmune diseases as well as books on lupus.
I finally have an appointment with a rheumy a week from today. I do not know anything about her. My question is how do I walk that line between letting her know I know something about my symptoms and taking a chance on her thinking that since I have read so much I am making the symptoms up. Thanks for any help and support you can provide. Julie

sick n tired
01-22-2008, 11:01 PM
Hi supposedlynotsick,

My goodness, you have had a rough go of it. I am so sorry.

So you are one of us who have been told or intimated that it is "all in your head" I understand.

In regards to your question....I suggest that you give your rheumy all of your symptoms and let her go from there. I would then ask her if she would begin testing me for autoimmune disease. She will ask you some questions of her own,(perhaps you have been sent a questionaire) There are 11 criterion for lupus.Saysusie has written all of that many times. Of course, if you have been reading about it then you may have seen how hard it is to be diagnosed. Many of us have gone around to doctors in the excess of 10 years before stumbling on a diagnosis...very frustrating!

The tests are frustrating, because sometimes they are positive and that can be a false or negative and that could be a false one. One thing that you could ask your rheumy is if you could have fibromyalgia. I have that one also. It is like arthritis of the muscles and there is intermittant pain. the pain is real so do not let anyone tell you it is because of depression. I have had that one said to me for 10 years before I found a rheumy who took the other tests seriously.

Please let us know that your rheumy says and welcome to the family

Blessings to you and yours,

Karen

supposedlynotsick
01-22-2008, 11:25 PM
Thanks for the support. I have had testing but thought my post was already long enough, so didn't go into that. I first tested positive for the LA screen but they thought that this might be due to my very low folic acid level. My primary care doctor did the ANA and the anti-DNA test and she said the ANA was barely postive 1:80 and the anti-DNA she marked with her pen "negative for lupus." I got that in the mail and was very upset because I was sure that was what it was. Now I have found out that can be low and you can still have lupus. She also did IGM, IGA, and a couple of other tests which were low as well. My homocystine level is very high however. I am going to have the rhemy test me for APS along with anything else she can think of, I think. I am going to stress that I always have the rare things so please test me for anything rare. I keep seeing 5% of people have a negative ANA that have lupus and anything that is 5% is usually me.
Well, again I think I have written enough for now. I am really glad I found this board! :)

sick n tired
01-22-2008, 11:50 PM
Hi again SNS,

If you are not satisfied then a second opinion might be in order. In fact that is not a bad idea even if you love your doc. The first rheumy that I saw was a jerk. Understand I went armed with a high ana that was taken two times so 2 high ana's and Hepititis c positive. He diagnosed me with fibromyalgia and proceeded to call it 'crazy womans disease" He took a whole lot of blood tests. I just took those blood tests to another rheumy. he had a different attitude and I have stayed with him. I hate to find new doctors, but I was at my whitts end. I was actually vowing to never go to another doctor because all of them were idiots. :) Anyway, I am glad that I persevered.

Btw A low positive is still a positive. I know some of the other low tests are testing for celiac disease so great that is low but refresh me what is the homocystine?

I agree that she does need to check the rare illnesses. I always feel that the statistics are great and have their place, but if it happens to you it is 100%.

here's to finding the right doc for you,

Karen

supposedlynotsick
01-23-2008, 11:42 AM
Thanks for responding again sick and tired.
Homocystine is blood clotting. A high homocystine means my blood it clotting too much. I went to the ER over the holidays to make sure I did not have a clot and that doctor was wonderful. He really really listened to me and even looked up my medical records. He said that in 2005 I had an ANA test and it was 1:180 which was a lot higher. He said I for sure need to see a rheumy.
Anyway thanks again for listening. If anyone else has any advice feel free! Julie

sick n tired
01-23-2008, 12:42 PM
Blood clotting.....hmm...

Have you had an anti-phospholipid antibody test or I believe the anti cardiolipin antibody test is for blood clots with lupus. Mine was high. years ago I had an embolism to my lungs and no doctor thought to test if I had lupus.....as I said some doctors are idiots. :)

Have a great day,

karen

crystalcandance
01-23-2008, 08:22 PM
I am going to have the rhemy test me for APS along with anything else she can think of, I think. I am going to stress that I always have the rare things so please test me for anything rare. I keep seeing 5% of people have a negative ANA that have lupus and anything that is 5% is usually me.
Well, again I think I have written enough for now. I am really glad I found this board! :)

LOL i give ya that on the 5 % deal - I always kid with my doctors that I just have freak of nature syndrome...lol! Always a good laugh to enlighten the mood. I have been diagnosed with APS but still pending lab work ups for lupus with a rheumy b/c i have neg. ANA... anyways i gotta go - hella appts tomo...welcome to the board! Candace