I have has a collection of symptoms for which I have been trying to get a comprehensive diagnosis for about 15 years. My rheumotologist and an array of other doctors are all stumped. I am sort of at my whit's end because my symptoms continue to get worse despite my doctors' best efforts. I am hoping perhaps the joint experience of this community might give me some ideas of how to continue to find answers.
Since I was a late teen, I have gone through periods of severe fatigue which have become more frequent in recent years. The fatigue comes with all over body aches and often swollen glands. I get sore joints with my knees being the primary offenders. There is no visible damage to my joints on an xray. Prior to being put on Plaquenil, I would get a red, hot rash over my left and sometimes right knee each evening. The size and severity of the rash would depend on how tired or stressed I felt. The pain came and went with the rash. I frequently have issues with muscle spasms in my back or shoulder.
I get recurrent ulcers in and around my mouth and sometimes even nose or scalp. (Herpes simplex has been ruled out through lab cultures.) I sometimes randomly break out into hives all over my body. I also get recurrent upper respiratory infections, which have improved but not entirely resolved by sinus surgery.
In my early 20's, I went through a period of frequent kidney stones and/or infections. More recently, I have been struggling with stomach pain and IBS symptoms. I have done a colonoscopy to rule out celiac disease and ulcerative colitis.
Most recently, I have been getting neurological symptoms. I have nearly constant pins and needle symptoms in my hands and feet. I have also had some trouble gripping things with my right hand. I just did an MRI to rule out MS, which was clear.
I am not deficient in Vitamin B or D. I also test negative for Sjogren's syndrome. My ANA tests always come back negative. I don't have an elevated Sed Rate or C-reactive protein.
At this point, I have been diagnosed with fibromyalgia. However, that would not explain the inflammatory symptoms like rashes, swollen knees or mouth ulcers.
I would appreciate any ideas for further tests, specialists, etc.