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Fustration with DX

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Old 04-15-2002, 09:46 PM   #1
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Join Date: Apr 2002
Location: Crestline,CA,USA
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quiltingjean HB User
Unhappy Fustration with DX

OK I have a question. I am not sure anyone can answer but it is worth a try. For the last 6 years I have had numerous symtoms. It started with a back injury that wouldn't heal. Then viral pneumonia. After that pain in all my joints like tendonitis in all my tendons, spasms in my back, esp. after using my hands/arms, low grade chronic fever, red face which develops into a rash (DX of dry skin or excema or I don;'t know) sometimes my face just turns red around my cheeks and across my nose then I break out in a sweat on my face/nose, difficulty urinating (although kidney fine except for chronic infection) blurry vision, tingling in extremities,and no saliva . I also get intermitant severe pain in one area of my body, like one time my leg/hip hurt so bad I was on crutches, the next would be my arm etc.

I have had numerous test the only positive test is a low positive ANA all other are neg. My rheumotologist says I am blossoming into something, unknown what. He mentioned lupus but won't give me that DX since he is unsure. I have to take numerous pain meds because of the pain and the only thing that really helps is prednisone, but I hate taking that. We are using the diagnosis of fibromyalgia but was DX with atypical fibro (what a joke of a DX) Oh well I guess I am just getting frustrated from being called bizarre everytime I walk into the Docs.

My newest problem is severe muscle spasms in my neck and head requiring hospitalization. Since this has started I have developed brittle hypertension, PVC's and trouble with vision. I also have developed an anurysm in my eye.

Anyway, now my question. Does anyone else have symptoms like this and if so do you have a diagnosis? I am really interested to see if there is anyone else like me out there. I don't fit into the lupus support group or the fibro one either, so I am curious.

THanks, JEan

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Old 04-20-2002, 07:23 AM   #2
Join Date: Apr 2002
Location: Atlanta, GA , US
Posts: 310
scbagrrrl HB User

I'd consider a new Rheumy - or at least a 2nd opinion. Has the doc seen the rashes? If you get another one, I'd show up at his office and at least let the nurse see it.

Getting the Dx can be very frustrating. I swear everyone thought I was a hypochondriac in the beginning, but when I read the description of SLE, I said "that's me!". I tested positive on my first ANA thru my PCP, was referred to a Rheumy (from hell) where my ANA came back negative and he called my a hypochondriac. I jumped up and down a lot and got a referral to another Rheumy, bloodwork came back positive and I've been positive ever since.

Try keeping a daily journal - note how you're feeling on a scale of 1-10, any fevers, rashes, joint pain, etc. It can be helpful to the doc. Be persistent and vigilent.

Have you tried asking the doc to perscribe something like Plaquenil to ease some of the symptoms - it's used for a variety of autoimmune probs.

Old 04-20-2002, 09:08 AM   #3
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Join Date: Apr 2002
Location: Crestline,CA,USA
Posts: 33
quiltingjean HB User

I think your right, while this rhuemy is supposed to be one of the best in the area he is afraid to DX me. Since he won't DX me with lupus he won't let me try plaquenil.

I believe on Monday I will initiate an appt with a new rheumotologist. Thanks a bunch.


Old 04-22-2002, 06:13 PM   #4
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Join Date: Mar 2001
Posts: 114
SusanM HB User

I won't bore you with my history, but will say that I've never met enough of the dx criteria for lupus either. I almost always have positive ANA- highest was 1:320. I have also had very high antiphospholipid antibodies, but no other lupus antibodies. Have lots of skin problems and I HATE dermatology-always treated like a hypochondriac (spelling). I was separated from my birth family young, and only recently found out that both my mother and sister have SLE. What I wanted to say is two things--First don't necessarily think that your doc is doing you a disservice by not diagnosing you with SLE if you don't meet the criteria. Lupus is a serisous diagnosis, and that dx could have serious ramifications like with getting insurance etc. You would be given more of a disservice by getting the dx if you don't meet dx criteria. Second, just because you don't have the dx doesn't mean you can't get treatment. I was referred to a Rhumy who told me he sees lots of women like me with chronic problems, who don't meet dx. He said don't worry about what it's called because all a doctor can do is treat your symptoms anyway. He suggested that I try Plaquenil, saying it's milder than other immunosuppresants. You should not need a dx to get it. I hope I never meet the dx criteria because that would probably mean I'm getting worse. Best Wishes, Susan

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