Re: Re: Post from a new member.

[Guest guest]

Dear Donna,

Seems that we are in the same boat as for new and in the dark about this thing we call rare. Look at all the e-mail I have just recieved in one day, seem it's not so rare.

Well Donna I am in Central California and Keeping the faith.

[Guest guest]

Hi ,

Welcome. I too am pretty new at this group but they have been so

helpful..It's not me withthe RP it is my 16 year old son. He has had symptoms

since 1998 and recieved numerous wrong diagnosis and he too suffers from

migraines and one continous underlying headache all RP related. He has not

been in remission for over a year. from what I have read and seems the

doctors who work with this disease say is there are diff drugs that not all

RP sufferers respond the same. what combination may work for you may not work

for (my son). So far he is on prednisone 55mg /day

Methaltraxate 40mg/ week and now cyclosporine 400mg a day and if this last

one doesn't work he will be put on cytoxan a chemo therapy regumine. we are

praying for remission . he is in constatn pain and now it has effected his

hips/

I believe God has a reason for all things /the reasons we are not always sure

of /but we are trying to minister as best we can to others through any

thoughts words or just showing our Christian strength that comes from Him

alone at this time.

gets very depresed at times and the blessing same as yours is they

finally diagnosed him!

Now at least we have a name for what he has went through

He got his diagnosis July 2002

We go to Mayo clinic on the 14 for an opinion of his treatment

welcome and you are added to our prayers

Phyllis ('s Mom)