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Ellen

Wow it is so great! We have another pair of sisters in the group!:o) So glad you both found us and hope you enjoy this group as much as I do. I see your sister did post and I just posted to her too! All I can say is WOW. You both have been through so much. I bet you are thankful that you have each other!

Take care and keep posting it is always neat to get to meet others in the group!

Lots of Love

Glenda

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In a message dated 7/25/01 2:11:19 PM Pacific Daylight Time,

elecurrier79@... writes:

<< I put my trust in God and take life day by day and try to do the

best I can. >>

Ellen, sounds like you do pretty good for all that is wrong... I admire your

spirit.. And thanks for sharing it with us.. Day by Day with Gods help is

the best way.

Good to have you in the group

hugs

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glenda

remember we have shirley and sherry, too, now, julie and ellen. isn't it great dawn

Glenda wrote:

Ellen

Wow it is so great! We have another pair of sisters in the group!:o) So glad you both found us and hope you enjoy this group as much as I do. I see your sister did post and I just posted to her too! All I can say is WOW. You both have been through so much. I bet you are thankful that you have each other!

Take care and keep posting it is always neat to get to meet others in the group!

Lots of Love

Glenda

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.265 / Virus Database: 137 - Release Date: 7/18/2001DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Sue Marth,

I don't know what the report said after my biopsy. The doctor didn't

tell me. I didn't ask.I will ask him. I'm starting to ask more questions

about results of tests and about what the doctors think is going on. I'm sick

of being in the dark about my own body. The docs aren't always forth coming.

I guess I'm intimadated by the drs.. I'm afraid of getting on their bad side

or that they won't like me and therefore not treat me very nice. I've got to

get over this. After all I pay them, right.

My family has been away for the whole of this week. I've been alone

accept for my personal care attendent, who comes by for 3 hours a day. I've

had a flare up but am doing okay and have enjoyed alittle time to myself.

However I'll be glad to have them home.

I pray all is well with you, take care,

Ellen

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Dear Glenda,

From what I can figure out, Shirley and Sherry are sisters who are

members of the group. Do they both have RP? Does RP run in families? I pray

its not hereditary.

Ellen

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Dear Ellen, I understand where you are coming from. My history is sinus problems and bronchitius plus ear flares going back to the early 80's. My first doctors blamed everything on the fact I smoked. Then in 1998 I got really sick and ended up in ER when my Type II diabetes was discovered. Went to a pcp in a larger town near us and he diagnosed it right away. Had an ear biopsy done and confirmed information. Have tried to find specialists for different things, dermatology and just finding another doctor who was more educated. My pcp says he's somewhat ignorant on RP but so far has been great with me.

Anyway, if you go as an informed patient they label you as a hypochondriac. Plus they don't admit they don't know the disease. My last doc said the usual about being in medical school and having every disease she studied. That's standard.

I know its very frustrating. One bit of advise is to get all your medical records. I ask for mine every couple months and that includes test results. You are paying for them.

Enjoy the time by yourself and rest. Life does go on...Love Sue Marth

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Ellen, Yes Shirley and Sherry are sister... They just lost their mom to RP.

It is not known to my knowledge weather it is hereditary or not.... I would

swear my mom had it and that is what caused her death, but they didn't

know..That was before I found out I had it.... I'm hoping (my daughter

doesn't have it) She has been having some symptoms and must be checked.

Hope you have a great weekend.

hugs

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ellen

shirley and sherrry are sister, they do not have RP but just recently lost their mother to RP dawn

elecurrier79@... wrote: Dear Glenda, From what I can figure out, Shirley and Sherry are sisters who are members of the group. Do they both have RP? Does RP run in families? I pray its not hereditary. Ellen DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Ellen

That is a good question. No one knows for sure.

It does seem to run in some of the families but I don't know of anyone in mine that had it.

I hope it isn't hereditary too. I wouldn't wish this crap on anyone!

Lots of Love

Glenda

Re: Ellen

Dear Glenda, From what I can figure out, Shirley and Sherry are sisters who are members of the group. Do they both have RP? Does RP run in families? I pray its not hereditary. Ellen

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Ellen, I agree it is important to ask your doc what

tests mean. I think sometimes they dont tell you

because they think you might worry too much. However

if you explain you need to understand what is going

on, and what effects meds have on your body, etc., I

find in general they are more forthcoming. Mind you

sometimes they just don't know and don't want to admit

it!!!

Hope you are well, take care, Love Liz

--- elecurrier79@... wrote:

> Sue Marth,

> I don't know what the report said after my

> biopsy. The doctor didn't

> tell me. I didn't ask.I will ask him. I'm starting

> to ask more questions

> about results of tests and about what the doctors

> think is going on. I'm sick

> of being in the dark about my own body. The docs

> aren't always forth coming.

> I guess I'm intimadated by the drs.. I'm afraid of

> getting on their bad side

> or that they won't like me and therefore not treat

> me very nice. I've got to

> get over this. After all I pay them, right.

> My family has been away for the whole of

> this week. I've been alone

> accept for my personal care attendent, who comes by

> for 3 hours a day. I've

> had a flare up but am doing okay and have enjoyed

> alittle time to myself.

> However I'll be glad to have them home.

> I pray all is well with you, take care,

>

> Ellen

>

__________________________________________________

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