Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 In a message dated 07/15/2000 8:05:24 PM Central Daylight Time, biglou5685@... writes: << Tricia, My sed rate is always normal, even when I am in a flare. The only abnormality in my blood work is an elevated white blood count. My Rheumy says on paper I'm in good health. lol Hugs, Sandy >> me too Sandy, and my Rheumy said that was normal to do that with RP? But my regular internist says different. Just enough to drive you crazy 2 opinions 2 doctors. lol Love ya! LU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2000 Report Share Posted August 5, 2000 Hi : Agree here too. My sed rate was really good and all labs looked ok except for ANA 1:320, IgM slightly high and slightly high complement C3. Dr. Silverstein said sed can be normal in most of us and that is why it is so hard to diagnose. Mostly only diagnosis on the guidelines listed as to having 3-5 of the listed protocol symptoms. He said one of the best indicators was if our throats, breathing etc respond with steroids that it's probably RP. Most with RP have multiple other medical conditions that haven't been diagnosed too. Boy this disease just keeps getting better. Thank goodness we have got each other. Hope everyone has a good weekend and can enjoy their loved ones. Cath Woods wrote: Me three, Tricia and Sandy!!!!! LOL!!!! My old Rheumy told me that the sed rate was NOT a good indicator for RP!!! But then again, what is?????? Mine has always been within the normal range, even during my worst flares!!! I just had mine taken recently because of a bad flare and it was "3". >>>>>>>>>>>>>>>>>>>>>>>>>>>> Hi Me too. Never a sed rate above three even with swollen glands, cellulitis on nose, fever, and sick as a dog. None of the doctors have ever felt that this ruled out RP though it does pose a puzzle, good luck. Credibility is important. this is not in our heads. regards Tricia Sue, I too suffer from dizziness and tingling in my hands and toes. I have vitually no feeling left in my last two fingers of my right hand. I had a scope done and all of the blood vessels in my nose are inflammed and I have edema of the Larynx and damage to my vocal chords. As far as Sed Rate mine is Always normal!! Had a Rheumy tell me, who is from one of the best hospitals in the country that you can have RP. and never have a high Sed Rate. I know I've said this before, but on paper I'm healthy yet I continue to suffer damage from the RP. It is so frustrating when a MD. tells you you're not in a flare because you're sed rate is fine but you know you are and they won't listen to you. I better close for now, going down on the Pred. and I'm feeling a bit homicidal today. LOL Don't want to start ranting and raving. Hugs, Sandy DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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