Re: New Here Sharynn

[Guest guest]

Hi sharyn

welcome, to this wonderful group, we adopt each other like family. feel free to ask all of the questions you want. usually someone here can help.

in some ways you are lucky that your dr knew right away that it was RP. I saw several drs over a 4 to 5 year time frame before i was diagnosed. I do not have any implants, so i know that is not what caused this RP. Please remember one thing do not beliver every thing you read about RP. it affects each of us a little different. that is why getting a diagnosis is very hard. I always tell the newbies, to remember there is life after RP. We have one lady int he group that has had it for 34 years so see you can live a very long life after RP. The catch is finding the right combination of meds that will work for you. So stay on good terms with your dr. and let him know what is happening so it can be brought under control.

by the way my name is dawn and i live in West viriginia. But i also use to live in Fort Myers FLorida

take care

dawn

sharyn1948 wrote: Hi EveryoneMy name is Sharyn Noakes and I live in Keystone Heights Florida. I'll be 54 next month and have been suffering from may illnesses for a very long time.It wasn't until two weeks ago when I just happen to have had an appointment with my Rheumy when I asked him about about the cartilage of both my ears hurting. They were very red, almost purple and hurt so bad I could hardly hold a phone to them. This was not the first time this had happend to me. About 5 years ago had it happen, but I wasn't one to go running to the doctor. I guess I was lucky...or not...that day since he knew right off what it was. Relapsing Polychondritis. I was quickly sent to an ENT doctor then the following day had a biopocy <sp> done. I was kinda in the dark so I went home after the surgery and started looking up RP. The more I read the sicker I got. They started me on prednisone and the following week was back in my Rheumy's office. He explained to me about this disase being rare and an autoimmune disorder of connective tissue. He also put me on azathioprine an immune suppressent.When he said autoimmune disorder of connective tissue this did not surprise me. I hope you all will not think I am nuts, but I am sure many of you have heard all the news about silicone breast implants and the claims of autoimmune disorder etc.You see 27 years ago I got implants. Silicone implants and from that day on I started to become ill. Mainly with joint problems which progress through out the years. It took me 6 years to finally convince doctors that not only was I in severe pain from them, but I was getting sicker and sicker. Well, they finally removed them three years ago after being in my body for 24 years. I had had one rupture about 8 months after I firt got these implants and was reimplanted.What the doctor found one would not have dreamed. My implants were ruptured. The scare tissue and silicone had crystilized and embedded into my chest muscles. It was a very difficult surgery, but they were finally removed.Some of my health problems did get better, but my health over all did not. My joints hurt, I've had rashes and I have lost all the cartilage in my right hip. I will need a hip replacement soon.I have tried to keep an open mind with this implants stuff, but I belong to several support groups and we all have a lot in common. FM and I'll try to spell it but I'm sure it won't be correct. Fibromyligia is the one factor that "all" of us do have. We are all sick and in my heart I feel that the silicone has much to do with it.I feel also in my heart that this RP I have been diagonised with has a lot to do with the chemicals used in silicone.So here is my question. Are there any of you who have had silicone implants of any kind? I know it sounds like I am grasping at straws, but my family history...five generations back have never had any of the illnesses that I have. I am also a diabetic which is making it difficult taking the prednisone since it has made my blood sugar go up high.I want you all to know that I am a very strong woman, but I will admit I'm scared to death. Not so much for me, but for my family and most of all my daughter who is 24. The other thing that has affected me is all that I have read has shown me that many of the problems I went to see doctors about is covered with this RP. And the doctors missed it. Some even treated me like I was nuts too. Now this makes me mad because if they had been good doctors they would have not brushed my health problems off.My Rheumy new because he happened to see a case when he was in medical school. Are there any suggestions anyone can offer me regarding this RP? I am still working, but I am slowing going down hill and do not know if working the way I do is healthy for me. Thank you all for allowing me to join this group.SharynDISCLAIMER!!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