THE PHAMTOM CALLER

[Guest guest]

Hi Group

It appears the Phantom had a very busy Sunday. She has asked me to post,

because I am one of the old menbers. I think I was member number 11 to join

this group.

Sooooo, welcome to all you new members!

I understand how frightened some of you must be. But in this group,you

will find years of first hand information and people or doctors that can help.

I have had many trips to the ER in the past eight years. I have talked to

dozens of Doctors who had no idea what RP is. In 1997 the RP deceided to

attack my whole boby.

My ears swelled to the point spliting the skin, my nose became so tender, I

couldn't wear my glasses.( I couldn't see well enough to drive anyway). The

Doctors did everything from a spider bite, to infections, to alergyes. I took

so many drugs, I though I was back in the 60's. I was desperate to find

someone who knew what was happening to me. I searched medical books, and my

daughter put out a web page. I found one page in a medical book, that made me

pray more often. I took this info to my GP, and he started me on 60mg of

pred. The swelling started to go down, and my sugar levels went off the

scale. I went from 209lbs to 147lbs. in about six weeks. Yes, I needed to

lose a few pounds, but this was too much!

THEN ..... W. answered my daugther's web page.(she may not

remember,we use that a lot). gave me information, and the names of all

the people she had found that had RP. There were three !!! Atro from

Finlandl, Judee's Dad,and Sue M.

A few mounths later told me about Angie, and the group she had

started. It was comforting to talk to others that have ths same problems.

Now we have over 200 members , all over the world, that we can share

information.

Everyone is different,but many of us have returned to a somewhat normal life.

I am now down to 8mg of pred a day. I am able to work full time. I have

ocasional flares,and have to up the pred to stop it. But , for the most part,

I'm doing ok, And I have gained a lot of great friends.

So, ask all the questions you want. Someone will help. You have hundreds

of pros in the wonderfull family.

Now you all know, why I don't post very often, I have a tendancy to

rambell,and it's a good thing I have spell check on this computer. Or this

would look like Hedi doing half German and half Okie.

Love Ya All

Jim Haight

[Guest guest]

Hi Group

It appears the Phantom had a very busy Sunday. She has asked me to post,

because I am one of the old menbers. I think I was member number 11 to join

this group.

Sooooo, welcome to all you new members!

I understand how frightened some of you must be. But in this group,you

will find years of first hand information and people or doctors that can help.

I have had many trips to the ER in the past eight years. I have talked to

dozens of Doctors who had no idea what RP is. In 1997 the RP deceided to

attack my whole boby.

My ears swelled to the point spliting the skin, my nose became so tender, I

couldn't wear my glasses.( I couldn't see well enough to drive anyway). The

Doctors did everything from a spider bite, to infections, to alergyes. I took

so many drugs, I though I was back in the 60's. I was desperate to find

someone who knew what was happening to me. I searched medical books, and my

daughter put out a web page. I found one page in a medical book, that made me

pray more often. I took this info to my GP, and he started me on 60mg of

pred. The swelling started to go down, and my sugar levels went off the

scale. I went from 209lbs to 147lbs. in about six weeks. Yes, I needed to

lose a few pounds, but this was too much!

THEN ..... W. answered my daugther's web page.(she may not

remember,we use that a lot). gave me information, and the names of all

the people she had found that had RP. There were three !!! Atro from

Finlandl, Judee's Dad,and Sue M.

A few mounths later told me about Angie, and the group she had

started. It was comforting to talk to others that have ths same problems.

Now we have over 200 members , all over the world, that we can share

information.

Everyone is different,but many of us have returned to a somewhat normal life.

I am now down to 8mg of pred a day. I am able to work full time. I have

ocasional flares,and have to up the pred to stop it. But , for the most part,

I'm doing ok, And I have gained a lot of great friends.

So, ask all the questions you want. Someone will help. You have hundreds

of pros in the wonderfull family.

Now you all know, why I don't post very often, I have a tendancy to

rambell,and it's a good thing I have spell check on this computer. Or this

would look like Hedi doing half German and half Okie.

Love Ya All

Jim Haight