Autoimmune Disease & Trouble Getting Diagnoses

[Guest swtmystry]

I've been having so much trouble getting a dignoses for my autoimmune disease that it's becomming very frustrating. People are even beginning to look at me as if I am a hypocondriach! First I was told I had rheumatoid arthritis, then I was told I had fibromyalgia, now that I've just recently gotten sick I've been told that it's not fibro but something much worse than that but they probably won't be able to give me an accurate diagnoses for even several more years yet! Her OPNINION she said is Lupus but it is not definite. She's apparently just gonna say that I have a connective tissue disease but then tells me it could be mixed connective tissue disease so we don't know what to think! All she would definitely tell me that what I have isn't pretty. So, I've been looking for some type of support group cause Lord knows I don't get it from family or so called friends, and there aren't any support groups close to where I live so I guess I'm hoping to find that here. If anyone has gone through what I am going through I'd appreciate a shoulder to lean on and maybe I can learn something from you. Maybe I can even figure out on my own which disease I have. Thank You!

[SurfSciGuy]

Found this on the web, might be of some use:

 

American Autoimmune Related Diseases Association, Inc.

 

 

International. 2 affiliated groups. Founded 1991.

Mutual support and education for patients with any type of autoimmune disease. Advocacy, referrals to support groups, literature, conferences. Newsletter. Supports research, physician symposium. Assistance in starting groups. Dues $24.

WRITE:

American Autoimmune Related Diseases Assn.

22100 Gratiot Ave.

East Detroit, MI 48021-2227

CALL: 586-776-3900

FAX: 586-776-3903

E-MAIL: aarda@aol.com

WEBSITE: http://www.aarda.org

[Guest swtmystry]

Thank you. I've actually already contacted them and was told that I needed to see a rheumatologist and I was like duh, I was already doing that. I will check with them again to see if I can locate a support group so thank you for your input. I still hope to learn more from others using this forum. Thanks Again!

[Sayonara]

Errr... how do you know you have an autoimmune disease if you have yet to get a satisfactory diagnosis?

 

Or did I miss something?

[LucidDreamer]

You might take a look at your diet. Diet plays a role in some forms of arthritis and other autoimmune diseases. You should definitely find a local support group for your problem because there is a lot of evidence supporting a direct correlation between a persons ability to cope with a disease and their attitude, level of support, and the amount of information they have. You might also want to check out a book called Spontaneous Healing by Andrew Weil.

 

Chronic disease is not very well understood today and they often have little to treat it, depending on what you have. I would definitely become informed about complementary medicine if I was in your situation. Complementary medicine is much better grounded than traditional alternative medicine and is practiced by a lot of MDs and DOs. I would seek out a good doctor who has some ideas about how to actually help you instead of telling you your up a creek without a paddle but don't worry when your symptoms get severe enough we can better diagnose you.

 

You may have a long tough road ahead of you and you need to keep a positive attitude. You should also look into some form of stress management like yoga or meditation because stress plays a role in most chronic disease. I wish you all the luck in the world and hope you start feeling better.

[DreamLord]

Hmmm, fibromyalgia sounds a lot like what I have. It took the doctors a while to figure out what I had. I was having troubles breathing while excercising so they thought it was asthma. That when on for a year, until I finally saw a neurologist. She said it sounded like myasthenia gravis. Did some tests, and turns out that's what I have. But it usually doesn't show up until the 30s, so I was kind of an oddity. I've been having lots of troubles with it since then, with medication and hospital visits and all. And there was a point where I was so weak I could barely walk.

 

LucidDreamer is right. A positive attitude helps a lot. And finding a support group, or a counselor, something like that will also help to deal with it a lot.

 

And by the way, don't feel bad if people think say you're a hypocondriach. The first neurologist told me that everything was in my head. If I'd listened to him, who knows what what of happened.