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Lupus
How many doctors did you go to before being diagnosed?
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6 or more - 66.7% - 2 votes
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Posted 2/2/2012 2:22 AM (GMT 0)
Hi everyone,

I have been to several medical specialists including gasteroenterologists, MD's, radiologists, and rheumatologists.  I have symptoms including migranes, pain in my lungs, lower back, inside of my knees, and abdomen, nausea, vomiting, fatigue, hair loss, weight loss, weakness, legs giving out, heart palpitations, loss of memory and concentration.  The pain is SEVERE!  I am allergic to all food except fish.  I am also allergic to sunlight, cold air and can only wear cotton clothes.  If I am exposed to sunlight, cold air and certain fabrics I get rashes and nausea.  The doctors all told me I was crazy because there is nothing medically wrong with me until I found an amazing rheumatologist.  Finally I was diagnosed with Fibromyalgia and Reynaud's disease. Did anyone else have problems with doctors calling them crazy and saying nothing is medically wrong?   

Posted 2/2/2012 11:47 PM (GMT 0)
I had a doctor tell me nothing was wrong with me when I felt so depressed, exhausted, and my legs stayed swollen terrible.
I had to go to a different doctor to find out it was my thyroid. Later it developed into lupus.
Posted 2/3/2012 12:30 AM (GMT 0)
Welcome!
I think that is a prerequisite to autoimmune problems! It took about 4-5 years before I finally got a diagnosis. 10 years later and I have a core group of doctors that I trust. PCP, allergist, rheumatologist, gastroenterologist and newest addition, nephrologist. Hope you feel better.
Posted 2/5/2012 2:54 AM (GMT 0)
Welcome Sparkles! You reminded me of some words the oncologist and I had. I have an extrememe good sense of humor. One day the doctor blew up at me... in front of his assistant and 2 other doctors he yells "THIS IS SERIOUS YOU ARE REALLY SICK" so I looked at him and said "Ya think? I knew I was on chemotherapy for a reason." He stormed off, the assistant and other two doctors were laughing along with me. Something is mediclally wrong. And you have to be able to eat more than fish, because (sorry mods) a body can't survive on just a protien it has to have some other stuff like bread, meat, fruit, veggies unless you are 10 feet under or so severely malnurished that you are about to be 10 feet under. You aren't crazy, my phone is! Seriously my phone always says "the days got worse and worse and now you see I've gone completely out of my mind. They are coming to take me away haha theeir coming to me away hoho hehe haha to the funny farm where life is beutiful all the time and i will be happy to see those nice young men in their white coats they are coming to take me away haha"

I am wondering if you have a sacilylite allergy (natural form of asperin). Cuz I am allergic to a lot foods too, and that is what I am allergic to. I hope you do feel better soon. Maybe you should go to a teaching hospital for your rheumy.

Btw, I am such a smarty, that I put my phone to play that song as I was being wheeled away in a hospital bed to the CT Scan. I looked straight at some hospital staff and said "Help me they are taking me away" They asked why i needed help, i said "I am too crazy for the looney bin, no one would want me" Got a good few laughs hehe
Posted 2/5/2012 7:38 PM (GMT 0)
Smurfyshadow, I love that song! It's hilarious!
Sometimes if you don't laugh you'll wind up crying.
Posted 2/7/2012 4:40 AM (GMT 0)
Of course Sparkles123. I have been hearing I'm crazy and that the pain is in my head for awhile now. Yelp! Heard it all the time. And even after my pain management physician sent me to a rheumy because my blood work indicated Lupus, the rheumy said she had to run additional testing because I may not have Lupus. She prescribed me an NSAID and told me to continue the Prednisone the pain management physician gave me. Contradicting! But anyway, the rheumy even put on depression meds. I purchased them but they are in the cabinet with the other wasted products. But to answer your question again, Yes yes yes :) But I'm far from crazy. Just frustrated!
Posted 2/7/2012 2:28 PM (GMT 0)
If you choose not to use the medications that your doctor is prescribing, make sure to tell the doctor. Lupus is a disease that presents differently in everyone, so there is a certain amount of trial and error necessary to see how your body responds.

Crazy or not crazy has nothing to do with the anti-depressants often prescribed while testing for a Lupus diagnosis. There are certain chemical reactions in the brain from lupus -- these change with the addition of antidepressants to the brain chemicals and help relieve some autoimmune disease symptoms.

NSAIDs and Prednisone are not contradictions to a Lupus diagnosis. There are other autoimmune diseases where the symptoms respond to these treatments - Lupus diagnosis is partly dependent of seeing what meds your body responds to. No body tests definitely diagnosis Lupus, it is a combination of blood tests, symptoms, and how you react to certain medications that gets you to a diagnosis.
Posted 2/8/2012 4:56 AM (GMT 0)
Thanks Lynnwood, I never thought of it as the chemical reactions in the brain. I guess I'm just so frustrated with the many medications and nothing seems to work. If I could have one day without pain I would probably feel like I won megamillions. When the rheumy prescribed the anitdepressants I was offended. I thought she was telling me I was depressed because of what I was explaining to her. Duh! I'm goofy! LOL. But anyway this forum helps a lot. I'm so confused yet frustrated and vice versa. Hopefully, I will get relief soon.
Posted 2/8/2012 4:13 PM (GMT 0)
Also, I noticed that the subject of this post is fibromyalgia. We have a separate forum for fibro, so you might find some help there if that is your dx.
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