Discussions By Condition: I cannot get a diagnosis.

Suggestions of diagnosis

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: LeRossignol22
  • September 6, 2007
  • 08:34 AM

My name is Shannon, and I have been battling some kind of illness for the last few years. It started as a few weeks of being tired and achy, then another year would pass, and at the end of the next summer I would be worn out from everything. Then the cycle would start over. By the end of the first few weeks of school, I would be dead, and I wouldn't be able to get anything done. The symptoms always started as vague: low grade fever, body aches, weakness, general malaise. It wasn't until the end of Summer 2006 that things really started taking a turn for the worse. The symptoms became much worse, I had chest pain and joint pain and the feeling that the life was just draining from my bones. About a week before my wedding I got a pretty good fever and SERIOUS pain over my kidneys. I couldn't stand for long periods without feeling like I was going to pass out. I began having serious problems with the feeling of smothering, especially when I would get in the car. I have never had any problem with claustrophobia and I have never had any problem with anxiety. This was all new to me because I have always been very grounded and reasonable. It seemed VERY strange to me to be unable to control my emotions like that. Well, I began going to my doctor's office regularly, when the symptoms would change or worsen. And I finally begged for an RA panel (my mom's a nurse and had RA, SLE, and osteoporosis). It turns out that my ANA was slightly elevated (1/320), so they sent me to a Rheumatologist. He specializes in Fibromyalgia. Well, in the two years that I have been seeing him, I have been diagnosed with a heart murmur that I hadn't had until recently, I have had some pretty weird things happen with drug interactions, and I have had skin rashes and serious reactions to the sun (which I have never had - I spent 3 summers in a row as a lifeguard/swim teacher). I've also had these stones in my urine that don't look anything like any kidney stones that my mom has ever seen (DARK red, soft and rusty looking). I've had an ANA as high as 1/1280, and I have found that I have some pretty badly damaged nerves in my lower back and damaged blood vessels in my right leg. In the past(about 10 years in my childhood) I had a rash across my nose and cheeks that looks just like a malar rash and that dissapated when I was around 15 or 16. All along, this doctor has ignored symptoms that go along with lupus or other conditions
and has continued to believe that I have Fibromyalgia. Now I am a zombie on all of the meds that he has me on, and I am still so sick that I can't really lead a normal life. I would love to hear some opinions as to whether I really have Fibromyalgia or as to what people think might be wrong with me. If you have specific questions, just post them. There's a lot more to my history than this, but I already made this story too long a boring as it is. THanks for reading to those that have. I am excited to hear your feedback....!:D

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