So, on another note I went to the rheumatologist (so did my sis Antbuggey, but I will let her tell you all about her visit) and he is stumped! He says that I definitely have fibro (already knew that) and a severe case of it (huh?) As for all the lumps, swelling and pain, he has no idea! My SED rate is still rising, it is now a 63 and my white blood cell count is up still but he says I don't have RA or lupus. Which I kind of already knew that because my tests had came out negative before.
He basically told me that he had no idea what was going on, he said there is something happening but I don't know what it is. So, I had a chest xray done at my regular doctors it came out fine. She took blood to check my thyroid to see if maybe I have graves disease and I haven't heard back on that test yet. She said that if that test comes back ok that we will start scanning my organs for masses. So I ask her if I have cancer and she says that we don't know yet what is causing my problems.
First I am so relieved to hear that your kids are doing well! That is wonderful!
I don't post all that often on this forum, although I lurk and read many of the threads.....I thought I should jump in here though and ask you a couple of questions. Pardon me if I have missed anything that you posted earlier that would make these questions moot!
1. Have you ever been tested for Lyme disease? Lyme disease can do many weird things, and can attack any system in your body. It can both mimic AND trigger autoimmune diseases (lupus, MS, RA, etc) and fibromyalgia. Lyme is much more common that most people realize, and it is very
easy to catch. You can literally catch it in your own backyard and the ticks that spread the disease are frequently as small as the period at the end of this sentence so are not noticeable.
2. Have your doctors considered sarcoidosis? It can definitely cause strange lumps and masses, although I don't know what your other symptoms are, so it may not fit your picture.
I am NOT a doctor and am not trying to diagnose you, I am just throwing a couple of possibilities out there just on the remote chance that something might help you. I know very well what it's like to be in diagnostic limbo and it's just AWFUL!
I truly hope you do NOT have either Lyme or sarcoidosis.....I pray that you will find your answers very soon and that your doctors will know just how to treat your health issues!
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAPautoimmunediseasesgfliving.blogspot.com