I have had hashimotos thyroid disease since 1999. I had total thyroid failure my TSH was 119! I have been treated for my thyroid and stay on to of that. I have been suffering from Fibromyalgia since then. (THIS WAS AVOIDABLE) the Dr forgot to call with the lab results, oops, till I was very ill in the end of 8 months.oops again.Yes, there was a malpractice I had to settle (2003) because I couldnt go on.
For 9 yrs I was positive with ANA now in the last year I am positive for SSB. I have had a lip biopcy that was neg. (Just found out today). What the heck is wrong with me ?I feel awful. My glands in my neck (under my jaw and below by ears) for 6 months or more. My lungs feel tight and heavy that comes and goes but gets bad. I have been on steriods 3 times for that. I had a flare a few months ago where my my fingers swelled really bad and turned red. I do have that thing where my fingers turn white and get numb. My rhemetologist wants to wait and see (ummm doesnt sound good) I really want to find out whats wrong. He said it could be nothing... Can I really be positve ANA and SSB and nothing be wrong?
If you're seeing a rheumatologist are u thinking Lupus??? How positive was the ANA. If your figures are turning white and numb it sounds like Raynaud's phenomenon which is associated with Lupus. Also mouth ulcers are common with Lupus. Also SSB is associated with Sjogren's Syndrome (which is associated with SLE). Maybe doc is concerned about malpractice and hopes you'll go away??? Get copies of your tests and go elsewhere....or demand more attention.
They wont tell me how high my ANA is they say they dont go by that anymore. I think when I figured it out before it was in the middle (the titer) is that what isnt called?
I feel bad every time it is rainy. I feel like a loser! Although, I know I am able to do more than most people with the same symtoms. I was able to start my own job doing the classes at the college. I am working up to every saturday for 6 hrs (that is excellent for my self esteem) I cant have a regular job as I am sick and tired all the time. I dont think they could just schedule me for sunny days only.haha
My fingers are white in the winter more often. Now, not so much... I dont have any
I might have to move to California. My sons Dad lives there, the weather is better and they have a better place to do my classes. I will have to start everything here first, so it will be over a year.
My rhemetologist never did return my calls about the xrays they did, he was suppose to send a report.
My family Dr could be worrying about something in regard to legal. He shouldnt... he is trying. He has been doing the right tests (I think) then sent me to the rhemetologist. I will go in if I get really sick. I am trying not to be on the steriods (he just think its something or he wouldnt have given me steriods three times) I am trying to stay off of those.
I'm so sorry you're feeling bad. I think you have Lupus. Which is what I think I have but can't get anyone to take me seriously. If I was you I'd find another Rheumatologist. I've never heard that they don't go by ANA anymore. Maybe you should contact the National Rheumatology association(I think thats what their called) and find out what the criteria is for diagnosing Lupus. I have all kinds of weird symptoms that no one takes seriously. Stick with the family doctor and try a different Rheuma. Good luck to you... Sheila
By law, you are entitle to request for copy of your test result, complete medical record. I always keep a copy for myself.
There're many auto-immune diseases have similiar symptoms with LUPUS, FMS. If your rhumy doesn't respond to your calls and request, perhaps it is not a bad idea to consider 2nd opinion..your family doctor should be able to refer you to someone with good reputation and caring, yes?
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