Alive and well in Old Fort, NC

[Guest guest]

Hello everyone;

It's been a while since I've checked in, but I have been thinking

about your group. I just wanted to let you know that even though I

haven't corresponded with you lately, I am still interested in how

everyone is coping with this. I know that it affects each individual

differently, and I am glad that those who are having a difficult

time, have a place to talk to others who know what they're dealing

with.

Personally, I am doing great. I am in remission, and have been for

three years now. It's still hard for me to believe that I have RP.

But a biopsy was done on my ear back in '98 and I was given this

diagnosis. I was on prednisone for about 8 months and gradually

weaned off. It took me over a year to get my strength back to normal.

But I attribute my recovery to the use of herbal medicine, after I

got off the pred. I still take feverfew, gingerroot and bromolain

everyday, along with a slew of vitamins and minerals. And I'm taking

Thyrolar for hypothyrodism, which seems to be pretty common with alot

of autoimmune diseases.

I wanted to know if any of you know what brought on your symptoms, at

the onstart of your illness. I found out last summer, from an

ultrasound test, that my right ovary looked like it had bursted,

maybe months or years earlier-without my knowing. My gynocologist

said that there was a possibility of it creating so much infection,

that it could have caused my immune system to turn on itself,

creating the RP. I don't know if that's what happened to me or not,

but it gives me an answer why my Sed Rate went up over 200.

I would be glad to correspond with some of you. I remember how

devastated I once felt, when at my worst times. If there is at least

one person I can help with my experience, I would be gladly to share

any knowledge or suggestions in the hope of others being helped with

this dreaded disease.

Susie Painter

[Guest guest]

Hello everyone;

It's been a while since I've checked in, but I have been thinking

about your group. I just wanted to let you know that even though I

haven't corresponded with you lately, I am still interested in how

everyone is coping with this. I know that it affects each individual

differently, and I am glad that those who are having a difficult

time, have a place to talk to others who know what they're dealing

with.

Personally, I am doing great. I am in remission, and have been for

three years now. It's still hard for me to believe that I have RP.

But a biopsy was done on my ear back in '98 and I was given this

diagnosis. I was on prednisone for about 8 months and gradually

weaned off. It took me over a year to get my strength back to normal.

But I attribute my recovery to the use of herbal medicine, after I

got off the pred. I still take feverfew, gingerroot and bromolain

everyday, along with a slew of vitamins and minerals. And I'm taking

Thyrolar for hypothyrodism, which seems to be pretty common with alot

of autoimmune diseases.

I wanted to know if any of you know what brought on your symptoms, at

the onstart of your illness. I found out last summer, from an

ultrasound test, that my right ovary looked like it had bursted,

maybe months or years earlier-without my knowing. My gynocologist

said that there was a possibility of it creating so much infection,

that it could have caused my immune system to turn on itself,

creating the RP. I don't know if that's what happened to me or not,

but it gives me an answer why my Sed Rate went up over 200.

I would be glad to correspond with some of you. I remember how

devastated I once felt, when at my worst times. If there is at least

one person I can help with my experience, I would be gladly to share

any knowledge or suggestions in the hope of others being helped with

this dreaded disease.

Susie Painter