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just want a diagnosis...

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Old 01-02-2006, 12:31 AM   #1
Join Date: Nov 2004
Posts: 69
kayte04 HB User
just want a diagnosis...

I have been dealing with health problems since around 6th grade, and I'm now 27. First it was Neurally Mediated Hypotension( a.k.a. NeuroCardiogenic Syncope), causing fainting spells and went to Mayo's twice for it, then came the TMJ with 5 surgeries, Chronic Major Depression - severe (although now there's a possibility of Bipolar), asthma, IBS, fibromyalgia, Reflex Sympathetic Dystrophy (a.k.a. Complex Regional Pain Syndrome) from the TMJ surgeries, migraines, lots of joint pain (wrists, knuckles - especially thumbs, knees, ankles, neck, back, you name it - more severe in a.m. and late p.m.), low immune system and getting sick easily, random fevers and swollen glands in the neck, cold hands, now my hair is falling out. My dr has done a chem panel twice, thyroid, sed rate, and a previous arthritis test and all were normal. X-rays of joints also appear normal. I am taking my prereq's for nursing school and feel pretty knowledgable in the medical field because of other training (phlebotomy, nurses aid, medical assistant) and my own experiences, however I know that it's not good to be diagnosing yourself. It does seem like lupus fits most of my problems and maybe people would stop looking at me like I'm crazy if I actually had a diagnosis to back me up. So, do you guys think it's okay to just come out and say "look doc, I want a lupus screening."? I go to church with my doc and don't want to come across as a hypochondriac. I just have to wonder if she's getting the big picture of things because each time I go in it's usually for an isolated symptom, but when you put it all together it makes sense. I just feel stupid taking this whole list of symptoms in. What have been your experiences? My cousin/roommate has rheumatoid arthritis and has it under control and I'm so jealous because I have 10 times as much joint pain as she does.
Thanks for reading this even if you don't have anything to say. Just don't know where else to go.

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Old 01-02-2006, 05:26 AM   #2
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Re: just want a diagnosis...

Dear kayte04, Welcome! I think your best bet is a rheumatologist, but one with a really wide practice and very up-to-date (e.g., a teaching hospital). My own medical issues likewise stretched from early childhood to my early 40's before anyone suggested to me that all my disparate problems might be related. So I can truly sympathize...

There are 4 "sticky posts" at the front of the Board here that could be very useful to you. They contain some very good "facts" but also some broader thinking that could be useful. In my own case, I think I went so long without getting answers for several reasons---

First, major organ problems (e.g., kidney, CNS, etc.) put up a huge red flag; but if you don't have any of those, drs. may not even think to test for lupus. Hopefully, a dr. wouldn't order the ANA, then wait for results before going further. Your best bet is to have a wide range of tests all at once.

Also, and in the same vein, there are different subsets of lupus. The info in the "sticky posts" speaks mainly to the main lupus, SLE (systemic lupus). Discoid lupus (DLE), is the mildest; its hallmark is a scarring rash. But there's an intermediate subset called SCLE (subacute cutaneous LE), only named in 1978, that overlaps quite a bit with SLE. That was the one I was Dx'ed with. Two different nonscarring rashesare heavily associated with it, but different than the malar rash often seen in SLE; ANA can be positive *or* negative; and anti-Ro and anti-La are the autoantibodies one is apt to find.

The third big thing I learned (per above) is that test results are more varied within lupus than one might imagine. When my local drs. finally started looking for lupus, they were looking mostly for a positive ANA, with antibodies to DNA. Instead, I had a negative ANA but was positive for anti-Ro, which is utterly consistent with the *SCLE subset*, but not consistent with *SLE*.

The fourth big thing I learned was that all manner of suburban GP's and specialists (dermatologists, gastroenterologists, urologists, neurologists, rheumatologists, etc.) might not recognize any but the most obvious case of *SLE*. I finally took myself to a Manhattan rheumatology practice known for lupus, RA & scleroderma. That rheumie went into high gear the second he saw my medical history & my rashes (big circles, nonscarring, on upper arms and back).

It's this "slow trajectory" thing that can drive a person nuts, I agree. Like you, I always thought I "got everything" because of an underactive immune system. Littled did I know that the problem was an immune system that was both OVERACTIVE and aberrant.

I hope something here provides some leads to something that helps you. And I hope you stick with the Board here for awhile---people here have had such a wide range of problems and have a lot of insight in how to muddle through to answers. Best wishes, from Vee

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