I am at the end of the rope and am really reaching out for some help. Here's my story.
In May I came down with an awful sore throat and painful swollen glands. Figured it was strep. Went to the doctor, they did a strep test and it was negative, but she put me on antibiotics anyways because my tonsils were so swollen. The antibiotics did help the pain but I didn't feel that the swelling ever went all the way down. One week later came down with what I figured was a head cold... flu like symptoms with a bad cough. Since then I have never felt that I have "gotten better". And during the last two months I have taken a nosedive. I tend to have "flares" where my symptoms get really bad and what happens is I get the painful, swollen glands, pain up into my ears, really bad headache, just an all over feeling of illness, fatigue and muscle pain. Sometimes some of these symptoms occur even without the "flare" ... the "flare" just amplifies them by ten. I would say I am always tired whether symptoms are really bad or not. I've also developed a new symptom .. pain in my legs. I get a burning/aching sensation in my upper thighs and when its really bad I can feel it all the way down to my feet. I have had a TON of blood tests and the only thing that has come back abnormal is my ANA. I originally had a positive ANA of 1:640. One month later I was retested and it had doubled to 1:1280. Have been tested for Lyme's disease, mono, Sjorgens, Lupus, RA, every type of vascular disease, CBC, metabolic panel, urinalysis.... etc. etc. Oh also I should mention my bilirubin was a bit high on the metabolic panel but the doctor seems to think its nothing to worry about. I did have an MRI which showed 12 brain lesions. The neurologist has assured me that due to the appearance and location of the lesions, they do not appear to be from MS. She thinks that my headaches are migraines and that is where the lesions came from. Not sure how I feel about that. Also, just tonight I noticed that I now have a new enlarged lymph node on the back of my neck (the other ones are on the front)
Anyways.. I'm just looking for some help. All my doctors appts are months apart and then it takes months to get the results... I'm just getting so frustrated. I need some help in what direction to go in next... ENT? Endocrinologist? Surgery? I just don't know. Do my symptoms sound familiar to anyone? I really think that the leg pain has something to do with nerves... but nothing showed up on the lower back MRI so... I'm lost.
I have seen a rheumatologist. In fact I have an apt. in 2 weeks to see another. They've tested me for various immune disorders and can't seem to figure it out. I'm wondering if maybe it's not an immune disorder at all but maybe some sort of long lasting virus? I just don't know