Liz/....and question for all

[Guest guest]

Liz and / and RP members

Thank you for the welcome messages. I really do enjoy reading the

messages and seeing how everyone deals/copes with RP. It has been

great to finally read some first hand experiences about it.

Liz, I'm very sorry for the loss of your sister last year. That must

have been very difficult for your family. My daughter with Down

Syndrome is 27 yrs. old, lives with us and has multiple medical

issues. The most concerning is a heart/lung disorder which requires

oxygen at night and twice daily treatments with a machine to help

keep her airways clear...similar to what patients do for cystic

fibrosis. She is a joy to our family and I can't imagine my life

without her.

I also had a question for the group as well. In addition to the

cortisol (cortef) I take for adrenals, I also use an ear drop which

is cortisone based....to try and keep the inflamation down. Has

anyone used that and was it effective long term? I'm also concerned

that I would have to get off the cortef at some point for testing as

I cannot take the thyroid medication without it, and for anyone who

has hypo thyroid problems, you can imagine going off of the

medication for any length of time. I hope they can make a final

diagnosis one way or another without alot of the testing or without

going off my present medications.

I'll keep reading and I hope all of you are having a great day. Jo