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Re: Venting
May 22, 2011
[QUOTE=leogurrrl;4759080]hi, there. I'm sorry you are having such a time :((( I have no lupus diagnosis, but have been battling symptoms that are very lupus-like for over 12 years. I finally gave up on giving it a label, but only after they started TREATING ME and my symptoms. If you can get them to at least treat you so you have some relief, that is a huge step (whether they officially diagnose you or not). It helped that I had a 1:1280 ANA, but no other bloodwork indicated a problem EVER in those 12 years. I'm convinced had I not had that ANA, they probably still would be blowing me off. Do you have any other options with rheumatologists?? I'm so sorry that anyone has to go through what some of us go through. ((((((((((Hugs)))))))))) to you. I'm sorry it is a bad day. Leo[/QUOTE]

Oh, I do agree with you. It doesn't matter what they call it. In my case I have a positive ANA but a low titer. Negative for Lupus but I have a high SED rate and CRP...that's my saving grace if you can call it that. They can't over look it and it goes up and down but it's never close to normal. They're treating me with Prednisone and Plaquenil. I'm good on doses of 20 mg of Pred but anything lower and the inflammation is bad and with it comes the pain and all the other nasty symptoms. They are considering maybe it's Lupus or some form of connective tissue disease and also seronegative arthritis. Whatever they're going to call it they're treating me and my SED rate has gone down some which is very good. They're decreasing my Prednisone though and my Plaquenil hasn't kicked in after 9 weeks so I'm not feeling quite as good as I was but hopefully they'll come up with something for me soon. I just want to get my life back...that's all. I spend way too many days in bed. It's been going on for YEARS now...like about 20 +. I understand the venting and the bad days too. I swear I get on my own nerves sometimes. When you feeling like everything you love or enjoy in life is taken away from you and you're left with being sick and sometimes people who just don't get it or want to understand...it's all very frustrating and it does make you angry and sometimes depressed.
Take care,
sharon





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