Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 --- drutledge SkyfireRanch@...> wrote: > Rita, Sorry to hear about your ears. It this time > there is not any testing > that will tell you if you have RP. Most of the > testing that the don't do is > to determine that you do not have other diseases > that have similar > presentations like RP. > What you really need to do is see a doctor that > specializes in RP. There are > five that I know of that are highly recommended and > every good. > 1) Dr. Trentham in Boston > 2) Dr. Jane Hoyt-Buckner in WA. > 3) Dr. Hobbs- CO > 4) Dr. Silverman-CA > 5) Dr. Noranna B. Warner in Texas > > There is a Dr. in AL that treats RP but I have not > had a chance to speak > with him yet. Although he has been recommended by > another Dr. and a RP > patient from a different group. > > All your testing that came back negative is a good > thing. It means that you > do not have some of the more awful diseases that are > out there. > P is correct about the c-reactive protein and > the sed rate testing. It > should be done when you are " flaring " and once or > twice when you are not > flaring to determine what your level of inflammation > is. These tests only > indicate that you have inflammation and nothing > else. But, coupled with > other tests the doctors should be able to determine > what is going on. > Skin biopsy are painful but good, they can also > determine what is causing > your inflammation. RP has some very rare skin > manifestations. So the > biopsies may only tell them that you do not have > lupus, celluitis or > something along that line of though. > Rp. is diagnosed on clinical presentation, history > and the absence of other > diseases. > > Hope this helps > R. > Skyfireranch@... > > > My name is Rita. I live in Montgomery AL. I > e-mailed > > your group yesterday needing as much info as I can > > get. My blood test was negative for this disease > - > > so, of course we are just waiting for another > flareup. > > I need some guidance as to what I should do. > > Rita > > > Hi again and welcome, there is no " blood " test for > RP, but they can draw a > > C-Reactive Protein and also Western Sed draw, > which can tell the Dr's the > > measurement of inflammation in the blood and this > is how the follow the > > disorder, do not worry about all blood work being > Neg, when you flair go > in > > ASAP for these blood draws. There is also a biopy > they can take (a bit > > painful though) but there is NO reason for them to > do this if they are > 100% > > sure you have the disorder. can tell you > more about all of this I > am > > brain dead today! > > > > KP , Please let me know the Dr.'s name in Alabama. I would like to go to see him and get started taking the test. I want to find out what is really happening. I appreciate so much your help. Rita > > > ===== Have a great day! Rita __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Rita That is the sad thing about RP it takes them forever to find out if you have it or not. They mostly go by the symptoms. I never had the biopsy or anything like that mine was determined by symtoms and I guess my blood work was really wacko. The lab tech remembered me well from that day on as the lady with the rare blood. I guess when they took the blood she read the work up and went right to the Dr. herself. She wanted to know what was wrong with me! Weird huh! Don't be scared they will find out what is wrong with you. I will be sending good thoughts and prayers your way so that they will do so soon! Lot of Love Glenda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Rita That is the sad thing about RP it takes them forever to find out if you have it or not. They mostly go by the symptoms. I never had the biopsy or anything like that mine was determined by symtoms and I guess my blood work was really wacko. The lab tech remembered me well from that day on as the lady with the rare blood. I guess when they took the blood she read the work up and went right to the Dr. herself. She wanted to know what was wrong with me! Weird huh! Don't be scared they will find out what is wrong with you. I will be sending good thoughts and prayers your way so that they will do so soon! Lot of Love Glenda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Hi Rita, Yes, you need to be flaring to have the biopsy done. It will make a big difference if you don't. So please wait until your flaring to have it done. Take care, Lu Do you need to wait until the ear is inflamed to to the biopsy. We are waiting - should we? Rita in Montgomery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 We had them real bad here... 22 Torenado's ...loads of damage .. 3 died.. 8 injured.. l have never seen that many at one time.. and changing direction some of them did too..we gat a cold front from the north.. down to 59 this morning.. was 86 last nite.. Otherwise feeling fine.. at least my bloodsugar is low this morning 90 (5.0) .. Hugzz Rita in Missouri Hi Rita, I am glad God's hands shielded you from these storms. 6 of us went to the movies last night and saw The Day after Tomorrow. It dealt with an early ice age, and talk about special effects! Wow, sounded like you guys are seeing some without the $9.50 tickets! Will continue prayers for your safety. Hugs,Marilyn Quote Link to comment Share on other sites More sharing options...
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