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clairew posted:
I was diagnosed with Raynaud's Phenomenon and my primary care doctor ran some bloodwork. I had a positive ANA and he referred me to a rheumatologist. The rheumatologist ran more blood work and I still had the positive ANA but the extended serology was "unremarkable". He told me to come back in 3 months or call if I had anymore symptoms or problems. Well, a month later I develop a crazy rash on my hip. It is red and raised and now about 6 inches in diameter with little bumps that extend from the top. It itches like crazy and is driving me nuts! I called the dr and have to go back Monday. Has anyone had this scenario or something similar? I have tried my best to not "google" lupus because I keep telling myself not to worry, but now I think I might need to be worried...
lisatru62 responded:
While not looking symptoms up on goggle or doing research can keep you from worrying, it doesn't help in getting a diagnosis. I let my doctors take the lead for nine years without any good results. They even sent me to therapy because they thought it was all stress related.

Two years ago I got a diagnosis and unfortunately damage has already been done. If I had started on medication sooner I might not have the problems I have now with my kidneys and my stomach. These are unfortunately permanent problems.

You are your own best healthcare advocate and if it requires you do medical research and try and figure out what is going on with your own health I say go for it! Don't worry chances are you won't find out anything that is too frightening and if you do at least you will be prepared.

Good luck

SafariMom responded:
I Google Everything, and yes, sometimes it doesn't help, but sometimes it does. I know that the "what ifs" can drive you crazy. Just keep an open mind. One thing I keep seeing is that with Lupus there is sometimes a definite diagnosis, and sometimes there isn't. Others here on this forum may be able to go into that more. I have heard some doctors say that it depends on which lab the blood test were run in. Sometimes the lab may say one thing, sometimes another may not. And sometimes the doctors are just so causal about it all,and are like.. "just come back if you get worse" or they pass you on to another doctor or specialist. The big picture is that you need to study Your body, get an idea about what is going on, and know the best way for You to treat it. Treatment can be personal and different for every person. Most of the time doctors look at your symptoms and just treat the symptom at the time. Inflammation/joint pain, nerve pain, depression, etc.
If you want to "talk"more, just email me:
I can tell you more about my story.
sandi96 responded:
Hi clairew- have you had chicken pox? If yes, you may have sshingles. I just had a shingles outbreak and a lupus flare at the same time. Hope you are doing better by now.

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