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where do i go from here?

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Old 11-17-2012, 06:17 PM   #1
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flyaway12 HB User
where do i go from here?

I had posted on the Autoimmune Disorders board , and I was told I might want check out this board, as some of my symptoms match the Lupus criteria. I'm having a lot of immune issues, and I'm just wondering where to go from here. Would I see my pcp and ask for more testing? Or see a specialist?

It's been a long time since I've felt well. I've always had frequent infections, but now I've hit an all-time low. It's usually 3-4 a year. Since I had my son last October, I've been sick every 3-4 weeks - colds, sinus infections, tonsilitis, pink eye (3x), vaginal infections, etc. I had my tonsils taken out in September due to recurring tonisilitis, but I'm still getting sick every month and I'm still have chronic throat pain. Almost 3 months after my surgery, and I'm still on painkillers.

A few things of note:
I was diagnosed with GERD, gastritis and then IBS about 11 years ago. They didn't do a colonscopy or anything like that. My gastroenterologist just gave me some meds, and said if they work, then thats what I have. I went several years with no problems at all, and it started flaring up (severely) several months ago.

I was diagnosed with rosacea about the same time. Once again, it went away for several years and flared up several months ago.

Also have a Raynaud's Phen. diagnosis.

I've been having frequent vaginal infections - probably due to the monthly antibiotics. I was diagnosed with Genital HSV1 about 10 years ago, and only ever had the initial outbreak. I may be having (all of a sudden) a back-to-back infection. Or it may be a yeast infection or a rash. I don't even know anymore. It's little red bumps that keep appearing and disappearing after a day or so. Nystatin/Triamcinolone seems to help.

Other symptoms of note:
joint pain
facial flushing
frequent swollen lymph nodes
red/itchy/swollen eyes (had pink eye 3x this year, but I still have these problems with my eyes)
chronic throat pain

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Old 11-19-2012, 04:24 PM   #2
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Re: where do i go from here?

Hi, flyaway. The ACR criteria for lupus are in the first "sticky post" (permanent info post) above. You generally (not always) must meet 4 or more of the 11 to sustain a dx of systemic lupus. These may be met over time, meaning not necessarily simultaneously. For each met, envision checking it off permanently, like you're writing in indelible ink. (Therefore it's important for a doctor to analyze your LIFETIME medical history.)

In the sticky posts, there's also a set of "alternative criteria". Also a brief list of symptoms; however, there are MANY MORE symptoms possible, which you could find (exhaustively) in library books.

Some of the ACR criteria are specialized lab tests. My rheumatologist only trusts certain labs because the tests (ANA, anti-ds-DNA, anti-Sm, antiphospholipid, etc.) are so difficult to perform.

I've read Rosacea is almost impossible to distinguish from the lupus malar (butterfly) rash visually, even by specialists.

Have you seen your gastroenterologist recently? I had 20+ years of GI problems, was tested for inflammatory bowel diseases (UC and Crohn's), also Celiac, but was dx'ed with IBS. What I didn't know was how common GI problems are in lupus. So if anyone tells you GI problems AREN'T common in lupus, I'd take that with a huge grain of salt (just a patient's take, of course).

Do you need a referral to see a specialist? Even if you don't, if you have good rapport with your PCP, you may want to discuss with him, get some rheumatologist's names he knows firsthand, also copies of all recent labs. But I'd want the rheumatologist to handle all new lab work.

Lupus can be a bear to diagnose, especially less severe cases, plus it can take years to evolve. But I think it makes sense to see a rheumatologist now, in light of your various repeatied infections & your other symptoms.

I hope others chip in with their thoughts! And I hope you post more after reading the stickies. Take care, all best wishes, Vee

Old 11-19-2012, 06:26 PM   #3
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flyaway12 HB User
Re: where do i go from here?

I actually spoke with my pcp today. She wants me to come in for comprehensive bloodwork, and then we will have a better idea of what kind of specialist I'll need to see. She did say that my symptoms can point to any number of things, so she'd like to figure out what we're dealing with first. She would also like me to give my ENT doctor a call since I'm still having throat infections and pain.

Old 11-23-2012, 05:24 AM   #4
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Re: where do i go from here?

Flyaway, yes! Good to read, a step forward. Keep pressing, and if multiple specialists are suggested, go for it! Let us know how you're doing when time permits. We'll keep our fingers crossed for you, bye for now, hugs, Vee

Old 12-16-2012, 10:37 PM   #5
Join Date: Dec 2012
Location: Louisville, KY USA
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derbychick HB User
Re: where do i go from here?

Go see a rheumatologist! If you need a referral, ask your PCP to do a test called ANA; if its positive, theres some type of autoimmune process going on. The roscea could be the classic butterfly rash but you need to get to a rheum as unfortunately, theres not one single test that will determine if you have Lupus. Its more like a rule out of other things so go see a rheum PLEASE! Good luck!!

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