Dawn's Story

[Guest guest]

Well Heidi you asked for it so here goes, I don't think its that big of a deal but here's what happened to me.

About 5 to 6 years ago I started have a lot of joint pain thought it was just old age so I tried to ignore it. Ask the Dr. about it finally at a general check up and he did some blood work and told me I probably had arthitis in my joints because my ANA was high along with my Sed rate. So I tried Naproxen. Well it worked for a while. Then I finally got really sick and My Blood pressure was really high 225/147 my PCP thought I was having a heart attach, I kept telling him that all i had was a lot of rib and sternum pain but he insisted that i was having a heart attach so off to the hosp I went. Well the Cardiologist was stump because my blood test did not show anything but I was in so much pain in my chest that It actually turned red in my ribs and then burised. Well the heart dr. put my threw a angioplasty to open my heart valvues up and found out that they were not closed off at all like most heart patients so then he was really stumped. In the middle of all of this after I came home I starated having trouble breathing like a very bad asthma attack, took a lot of pred and breathing treatments to open me back up to breath agin. Then I started swelling in my face , my eyes would turn the color of blood, (bright red) and then swell shut, Went to my PCP one day with my eyes and nose so swollen he wanted to call the police because he thought some one had beat the crap out of me. My nose was twice its usual size and one of my eyes was swollen completely shut and swelled out so far it looked like a small ball of some sort under it. He put me on Pred and it all went away. Finally one of my ears swelled up like a ballon and he thought it was a spider bite or an infection. Again put me on pred and anitbiotics and it went away. In the mean time they sent me to a neuologist because they thought i might have MS or someother muscle disese because my legs would not hold me up and my joints were swelling so bad, At this time my blood work was all normal so they were really stumped, Put me through a EMG, now let me tell you that was the worst thing I ever went through and I will not go through it again, Well it was borderline abnormal so then they did a biopsy and it was again borderline. Now the ears swelled again this was in Sept and one ear swelled up tried pred again, the ear went down, went off pred and the ear swelled up again, pred again, plus anibiotics, ear went down, went off pred ear swelled up, this time both ears swelled up, turned bright red and started peeling, guess what pred again by this time it was the middle of October and I had been sick since labor day. At this point still did not know what it was that was causing this and me and my PCP were at each others thoats screaming, I was in so much pain and he was sick of me being sick, told me he was having nightmares about me and could not eat or sleep because of me. Well this was the beginning of Nov. and I had beeen sick since Sept. Well that day he put me on 80 mgs of pred, and call and ENT, who in turn called a rheumy, well after the threee drs. were ont eh phone for 3 and 1/2 hours trying to figure all of this out, the ENT said I think i know what it is after hearing all of my history, and he told my PCP to call me back in and tell me it was the RP, the next week i saw him and the rheumy and it was confirmed that it was the RP. I thought for sure I was going to die because of the info I was given, and believe me it was this group that convinced me otherwise, I now know that there is life after RP and it can be controled, I am still not really happy with my rheumy but at least I am doing better. The town I live in is so small the rheumy told me that they may only see once case of RP in 30 or 40 years and I had to be it. So now you have it my nightmare on RP.

dawn