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Old 12-19-2012, 09:18 AM   #1
marymk marymk is offline
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Join Date: May 2006
Location: Syracuse, NY
Posts: 356
marymk HB User
waiting on referral

Sorry this is so long, so thanks to anyone for reading through it.

I'm waiting to get a referral from my GP - he's been hesitant to refer me anywhere, since my lab work has been mostly normal, but I'm pushing because I've been to him 5 times since September with no answers.

It began with a very red and a bit swollen rash on my cheeks - just under my eyes in August while on vacation out west - spent alot of time in the sun and just thought it was sunburn - even though I use sunscreen - it faded in about 8 days - and was only on that area of my face.

Then in mid September I got a rash on my face,nose and forhead that is looking a lot like the butterfly rash - it was at times itching,burning, tingling or at times just there.

I went to my GP - had two seperate does of Prednisone - each time it cleared up, until about 4 days off the meds, then it returned. I've had blood work for the usual CBC's and also kidney and liver function - all within range. Then I have a second round that included ANA,RF factor and ESR. My ESR was elevated, but he ANA and RF were negative - The lab report didn't state and values - just 'neg' so I dont know if they were slightly negative, or very negative - I was also on the Prednisone at the time.

Now it's December - still have the butterfly rash and realizing more sypmtoms - fatigue is getting much worse. I've always had some - now I can hardly function from late afternoon through bedtime. My finger, and knees are somewhat swollen and are stffl upon wakening, and then again at night. I'm starting to get headaches, my eyes ache, I've gotten sores on my ears,neck and scalp - they are small, but annoying.
Also - I'm hypothyroid and those labs tested fine. I had skin issues when I was first diagnosed as hypo - but this is different. I aslo have dry mouth, sinuses always seem irritated - I carry nose drops with me always, and I have had carpel tunnel, tendonitis,costocondrotis, anemia at various times over the past few years.
It seems that they should be able to find something - also my mom had Raynauds disease very bad (she's passed now from kidney failure), her sister died from liver disease, and of the other two surving siblings - my uncle has arthritis throughout his whole body, and is being tested for Lupus now, and my Aunt has fibro and had her spleen removed last year - as a last resort effort to help her very bad amemia - that they are not finding a cause for.

My fear at this time is that I am 54, and don't want to end up in 10 -15 years being undiagnosed and my health declining with no answers, as it seems my mon and her family have had happen.

Thanks to anyone who has read my plight.

Mary

 
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