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I am very excited to learn about this support group, the more I read,

the more I am hopeful that there are others out there that can offer

me some answers, I have been having a terrible time with this RP.

Since I was just officially diagnosed about 3 weeks ago, I have been

living with this pain since November. I am hoping that the Pred.

and Metho kicks in soon. As of today, I have a flare in my Right

ear, both of my feet and they say something is in the bottom of my

left lung. I am scheduled for a CT needle biopsy Monday.

I just am hanging on to the hope that the pain will soon go away.

Although I am on pain med, it still does not " male it go away " .

I have read that with the right meds you can go into remisssion, does

that mean I can go back to work? Am I going to be able to get back

to my daily schedule, or is being on disability and trying to just

have the strength to get up going to become a way of life for me?

Gosh, I have so many questions-I hope that I don't overwhelm anyone.

But I have been so confused for so long, I just want someone with

some experience to shed some light on this disease. The docs here in

Shreveport, Louisiana have never seen anything like this and they

certainly don't want to admit itm they just want the almightly $$$$$$.

Any info is appreciated-I am so glad we found you.

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