ER Docs - Donna, Glenda,

[Guest guest]

Hi Glenda and Donna,

here,

Donna i could not agree with you more. Over the last 2 years of me having RP. I have visited the ER maybe 4-5 times. Each time i would go I would tell them symptoms i was having. One ER doc DX me with Costochondritis. He said it should be gone in 6mos.

, Another thing i just want to add,

My family Doc at the time was no help. When my eyes didn't clear after one month of him treating me for allergies. Mind you i had never suffered from allergy symptoms or even been sick to where i needed a doctors appt.. I told him i wanted to see an eye specialist because my eyes werent getting better. He put me on antibiotics- amoxicillan, Zithromorax-spelling, Nothing helped. My Optomologist, had it not been for her telling me that i was really sick and to change doc, privately. She called my Pcp and told him he needed to refer me to a Rhuematologist now!, because this child is sick. I think she told him more than this because after that day my doctor was doing everything he could to get me to the right doctors. I could not get this Doctor to do anything up until 2mos of me having my first rp symptom.

All of you new people who have been diagnosed early and have no trach involvement please make sure you tell your doc every little symptom you get. If they are not trying to do everything they can to help you, please change Doctors. I stress this. My Rhuemy wanted me to get off the prednisone because of the long term damage that it can cause being on hi dosages of it. I wasn't having outside flares. My flares were in my lower airway. It didn't hurt, I was getting short of breath. This was my warning sign. But i didn't know that my airway was shutting. My airway had closed to the size of a straw by the time i got over to the second hospital in one area. When they intibuated me they had to use the stuff they would intibate an infant with. They had to dialate my airway. I was out i don't remember one thing that happend to me. I was told by my family and my new doctors how sick i had gotten. When i go back to my doctors visits, to this day, i may run into one of the many doctors or nurses who cared for me while in the hospital. They can't believe that i was the same girl. Well i will talk to you all later.

Love

[Guest guest]

:

It sounds like you have really been through a lot. Hope that thing go better

for you

Donna