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Old 03-13-2007, 05:04 PM   #1
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starrval007 HB User
Arrow PLEASE GIVE FEEDBACK!!Getting tested for lupus and raynaud's tomorrow......

Hi am getting tested this Wednesday(i switched my appt b/c i cant wait anymore) for Raynaud's, Lupus, or any other autoimmune disorder by my Dr. My history:30 years old, I have had pleurisy for 6 years, and it comes now and again to where I cant even move..because if I do, it hurts to breathe soooo bad!, my hands and feet have always been cold, but lately its been to the point where they get like bricks of ice..2 pairs of socks on my feet, and no help from it...they turn a purplish blue color, then when i warm them up under warm water, they get red and swollen looking for a while...my nose sometimes is like that too, I also have been experiencing these red rashes on my face..it doesnt really appear in the sun, usually it will start on my chin or ears, then go from there until my whole face is red and burning hot...as a kid I remember I would get them on my knees too), sometimes I will wake up and have this terrible pain in my toes, which feels like pinched nerves and I cant move my toes for hours, or I will have leg soreness and pain, my hair has been falling out frequently, i feel like im a dog shedding!, I also have had hormonal imbalances for the past 4 years and was diagnosed with Polycystic Ovarian Syndrome, and Endometriosis with I have had 7 surgeries in the past 3 years which includes the removal of my tubes, ovaries, and uterus. Medications I take: Premarin (for the menopausal in me!), glucophage(because im insulin resisitant), and phentermine for the past month(to shed the 40 pounds i have gained for all the hormonal isssues in 2 years flat)...i am extremely fatigues all the time, so much that sometimes i fall asleep at work, or take power naps in my car because im afraid to pass out on the road...i cant drive on road trips anymore because of that...i know im rambling, but you guys are experienced when it comes to lupus...i would like to know if this does sound like symptoms of lupus as far as you know, because im scared to death to add another non curable disease to my list...and while im waiting for the bloodtests next wednesday, id like to get info on it to inform myself just in case i do have it! PLEASE ANY ADVICE WOULD BE HELPFUL>>>>>>

 
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Old 03-13-2007, 06:01 PM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: PLEASE GIVE FEEDBACK!!Getting tested for lupus and raynaud's tomorrow......

Hi. I read both your posts. Obviously, I'm ONLY a patient, so that means nothing I say truly counts; you want the insight of a grade-A rheumatologist!

Have you read the "sticky posts" at the top of the thread list? Look for the "4of 11" ACR criteria on how lupus is Dx'ed. You'll see right off that some are test results & others are symptoms; thus your rheumie should take a very thorough lifelong medical history. Note: you don't have to fulfill the criteria all at once. Instead, think of each as being checked off in permanent ink. (Problem with this: drs. like to SEE things themselves, and who can really blame them?)

Also, read the "sticky post" on test results. There are places to read more about the various blood tests & what they may mean.

Another option: try the search box above.

Books: Most libraries & bookstores have lupus hardcovers. Look for one by Dr. Daniel Wallace. Another great choice: Dr. Robert Lahita. Both cover the various forms of lupus, the symptoms, tests, what other diseases & conditions cause similar problems & how drs. determine one from another, meds, etc.

I was scared once lupus was mentioned as a possibility, too. It took another year or two (I can't remember) for me to get final answers & the help I needed. But I kept reminding myself: I made it THIS far... I drove straight to the library for books (see above). Once I learned that many people with lupus can actually feel much better with treatment, that eased my mind too. I'd had problems all my life but was really sliding, and that motivated me.

I hope this helps some. Post again when you can, OK? Sorry it took me all day to write---but am having spectacularly AWFUL month so far (not my health---other things). Hang in there, OK? Warm wishes, from Vee

 
Old 03-15-2007, 03:13 AM   #3
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kidd123 HB User
Re: PLEASE GIVE FEEDBACK!!Getting tested for lupus and raynaud's tomorrow......

Hi there,
Just wanted to let you know that I understand what you are experiencing, and hope that you are able to get answers soon. I was diagnosed with Raynauds when I was 23 yrs old, and was scared, wondering what was wrong with me. (Now I am 53 and have lupus.) But the Raynauds severity comes and goes, sometimes even years can go by and I would forget that I have it. Stress makes it worse, also some meds & so I hope that you can get help from a good dr soon. Treatments can really help.
Also getting rest and eating healthy. Hope you feel better soon!

Last edited by kidd123; 03-15-2007 at 03:18 AM.

 
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