Re: Digest Number 2499

[Guest guest]

Hi everybody!! I am , new to the group and this is my formal intro.

I am 55 and got sick when I was 18. Back then they diagnosed me with an undetermined collagen disease and I never felt well after that. At some time or other, it morphed into RP. I was diagnosed with RP in '93 and had gone to many doctors in-between, only to be told that there was nothing wrong with me. I was in so much pain at times that I would literally shake from it. My adrenals began to fail in '73 and so I was put on prednisone. My nose began to swell in the 80's and I was told I had rosacea! My nose bridge collapsed in '92, I had repeated bouts of pneumonia and still, the md's had no clue. I did a lot of research myself and eventually, I found RP described in a new edition of the Merck's manual and... that was it, a perfect fit!! Oddly enough, it was such a liberating experience to finally give this a name, to validate the sickness that had pursued me for so long. One thing it taught me is that our bodies never lie. I was put on dapsone (no good and I became allergic to it), then methrotexate (no good for me) then on Arava (better but not quite) and then on Arava and Colchicine plus prednisone that I was taking anyway. The little cocktail seems to work pretty well. I have a good rheumy (as you all say) and a good pulmonologist. I've also been to doctors who are severely limited in their humanity and expertise.

I am married, didn't have children because my body betrayed me during my child-bearing years. My mind didn't betray me, so I became a theologian. I didn't know this group existed, found out through W (she's been so gracious!) while doing some research for pressure in my head. This gets so bad at times that I am afraid of a stroke, but I don't have high blood pressure, so I am puzzled.

My latest is: the pressure in my head led to an MRI in Feb. It came back reporting I had had a stroke. A second MRI with contrast in April came back saying the same thing, except they located the stroke in a more precise place, the mid left parietal lobe. I was sent to a neurologist who said the radiologist was imagining the whole thing and there was nothing there, that everything was normal. It's like a house of mirrors, who do you believe? Has any of you ever felt that some physicians like to play mind games with patients? I am very upset and angry and want nothing to do with md's and hospitals and tests for a long, long time.

I am glad I found you. I have felt very isolated all these years. It seems that bits and pieces of our stories coincide. It seems we all go through the same frustrations and the ups and downs of hope and anguish. It also seems that we are all unbelievably resilient.

Love and prayers to all,