I can't figure out what's wrong with me & the dr's. don't seem to care! I was diagnosed 13 yrs. ago with CFIDS & just 1 month ago with Fibro. I had foot surgery in March & the pain never went away so I was sent to a Rheumy & he said I had the FM as well as CFIDS. He did not run blood work though. When I went to see him, I was having pain only in my foot & I was mildly fatigued. Now, I cannot drive, work, or even take care of my son! I have severe headaches, chest pains, hot flashes, cold sores, tongue ulcers, I am having trouble breathing, dizzy, nauseated, my head & the left side of my body goes numb whenever I have trouble breathing. I went to the ER the other night - BP 165/108 (normal for me is 100/68) - heart is ok, blood work ok, they said my urine looked "contaminated" whatever that meant. Today, I had a follow-up with the Dr. & almost passed out in her office. She has no idea either! I did ask my Rheumy to run blood last week. What does this sound like? I am really scared!
It sounds to me like you are maybe getting the write off from this Rheumatologist. It is much easier to write someone off as CFIDS or Fibro then it is to actually look into the complaints. A lot of these Rheumatologist operate on Blood work only- they won't diagnose Lupus without the blood work! BUT you can have negative blood work and still have Lupus. Have you ever seen a Neurologist for your symptoms, as well as a Cardiologist and all that? What is your GP doing for you?
It sounds like you may need a second opinion by a whole fresh group! Please try to stay as calm as you can. It doesn't help to feel so stressed, it makes everything seem so much worse. You must be serious because it is your health, so please get back to the GP (if your GP Is good) and see if you can get into a different Rheumatologist. As for the numbness, I have that and I have a blood clotting disorder that goes with Lupus called Antiphospholipid Syndrome. See if you can get your records and check if you have been thoroughly investigated for Lupus! The tests are the ANA, Anti-DNA, Anti-Ro, Anti-SSA, Anti-SSB as well as lots of things that can show up in urine. Contaminated urine just means that something interfered with the testing. It could be a yeast infection, urinary tract infection etc. Did they re-test it? You need to find some good doctors, because Lupus is a really hard thing to diagnose. I call it a "journey to diagnosis" because sometimes it can take a long time to get diagnosed (like, years!). Take care and I hope this helps