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I know all you readers must be getting sick of analyzing people's symptoms, but I would appreciate any opinions you may have. I first started having problems about 3 years ago. I was experiencing extreme fatigue and joint pain, mostly in my hands and wrists. My primary care Dr. sent me to a rheumatologist who couldn't find anything wrong with me. All tests including ANA were negative at that time. Since then the joint pain has subsided for the most part, but I am still tired all the time. I can sleep for a whole day if given the chance and it is so hard for me to drag myself out of bed in the mornings. For the past two years, I have had a low white cell count on routine blood tests (not sure of number). Recently, my PCP sent me to a hemotologist who ran some other tests. My ANA is now 1:320, sed rate is 29, and proteins are elevated. They are now running additional tests for the proteins (amino fixation tests??). The hemotologist said that Lupus is a possiblity. I also have enlarged lymph nodes in my armpits and I often get an itchy rash at various locations on my body that is like small white blisters. When I scratch, I get little purple dots where the blisters were. Does anyone have any thoughts on all of this? My PCP wants me to go back to the rheumatologist so I guess that's my next step. Thanks in advance for any thoughts or ideas.
Hi cathy and welcome to the board :)

It really sounds like you do have Lupus. Your ANA is quite elevated too! Do you know what the pattern of your ANA was? (ex/speckled, centromere etc). A person's ANA can change on a day to day basis sometimes and we can be positive with the ANA when we feel the best. Lupus is an odd one thats for sure. I understand the lymph nodes and the fatigue. Its so hard to stay awake sometimes! Often we are misdiagnosed with fibromyalgia, chronic fatigue syndrome etc when really Lupus is the cause. Lots of us have doctors tell us that we are crazy too! That's only because they can't figure us out. It sounds like your symptoms and blood work are defintely consistent with Lupus. Have they tested you for Sjogren's Syndrome? They do blood work for it, but also they will put a small piece of litmus paper into the lower eyelid to measure the eye moisture. Sjogren's is a dry eye, mouth, nose, etc syndrome. I didn't really feel like I had dry eyes but I am "bone dry" on the moisture test! I yawn all the time, which is because I am trying to lubricate my eyes. Sjogrens goes with Lupus. Do you have problems with headaches, or have a history of stroke, DVT (leg clot) miscarraige or TIA (mini strokes)?

If you do have Lupus, this Rheumatologist that you will be seeing will hopefully recognise it and treat you. It seems that this is pretty cut and dry, many of us go through years of symptoms before finally getting diagnosed properly! I am sort of glad that your blood work is positive, that means that you can get on with life and be treated! If your blood work is negative, they try and write ya off sometimes! I hope that this helps you, and that you feel better soon. You can check out the symptoms of Lupus in this forum to see if yiou fit. I always recommend to people to go through all of they're health charts from over the years and look for "oddities" and pull them out to take to the Rheumy. Its good to be prepared when you go. Also, write a list of your current symptoms. It's good to go from head to toe and try and think of everything that is going on. I know that I get flustered when getting ready for an important appointment and keep a list of symptoms to discuss with the doctor. Take care!!

~Angelic





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