New Member

[Guest guest]

Hi Isa, it is sooo good to hear from you. Please write when you can. We

will love to hear from you and get to know you better.

Hope you are doing okay. Please let us know if you need anything.

hugs

[Guest guest]

Welcome to the group Isa

Glad you have found us! You will find that this group of people are the best people you will ever find. They will help you anyway they can. If they don't know the answer to a question they will tell you where you can find out or help find the answer.

My Name is Glenda and I live in Oregon. I have had RP for over 8 years now and pretty much lead a normal life for me!LOL I am 44 years old and have two grown children. My husband of 28 years and I are raising our 6 year old granddaughter.

I am on Imuran and it has the RP pretty much under control. I only take pred. when I have flares. I was very luck and was diagnose early. My Dr. got it under control in it's early stages.

Take care and post as often as you like we are all here for you!

Lots of Love

Glenda

new member

hi everyone, my name is Isa and I am a new member, I write to you from Puerto Rico and I will write to shortly. Prayers to all

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.264 / Virus Database: 136 - Release Date: 7/2/2001

[Guest guest]

Hi Isa,

Welcome to the RP list. I am looking forward to your posts and getting to

know you.

Sandy

>

>

>

> hi everyone, my name is Isa and I am a new member, I write to you from

> Puerto Rico and I will write to shortly. Prayers to all

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

>

> 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

>

>

[Guest guest]

Isa , we are glad you found us , but sorry you needed to . How long have you had rp ? My mother had it she recently passed away , but this group was a wealth of information and so wonderful . Each and every one of them are special in their own way . They don't mind questions at all . Hang in there . Love & prayers . Sherry

Centeno wrote: >HELLO TO EVERYONE, THIS IS ISA FROM PUERTO RICO, IT IS HARD FOR ME TO >COMMUNICATE, EVERY DAY I GET ONE STEP CLOSER, I WANT TO TELL YOU ABOUT MY >EXPERIENCE WITH RP. GREAT DAY TO ALL...GOD BLESS....ISA_________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.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

[Guest guest]

In a message dated 8/22/01 11:38:40 AM Pacific Daylight Time,

RCColloran@... writes:

<<

My daughter is suffering from RP since June 2000, when

we were living in South Korea. In her case, the

>>

Ms Jun, welcome to the best support group around. I'm so sorry to hear about

your daughter...Please keep asking questions and I'm sure someone in the

group can help guide you in the right direction...It is hard enough to have

RP as an adult, I can imagine the pain you go through watching your child.

RP is controlable. There is research being done and hopefully a cure will be

found one day... We have just started a RP Foundation and hope to be able to

make the public and medical professions more aware about this disease. Also

hope to help fund the research.

Please don't be shy and just ask all the questions you want... Again welcome

to a great support group and hope to get to know you better.

[Guest guest]

hello.

i have 3 chidren with RP; The youngest is my daughter Coralie , she'i 14 as your.

She was dx 6 years ago.Her brother is 11 now; He was dx 3 years ago. and my other son Nicolas is 18 now had the same symptoms since 2 years.

They are all vegetrian but not vegetalian.

We beleive it help for their flares.

In summer(it actually summer in France) and specially in AUGUST THEY HAVE nO FLARE .The flare 'll beagan in september.Maybe a school' allergy lol.

Now they take the less medications they can.

Ihope it can help you

Sorry for my poor english

Marie-pia

[Guest guest]

Marie Pia, so good to see you post again.... How are all the children

doing... Are their flares any better than they were?

We were talking about alot of us flaring now... Maybe we should all come to

France for Aug. LOL

Hope you are coping okay and please try to post more.. Love to hear from

you... Give the children all a hug for me and hope they continue to be flare

free.

hugs

[Guest guest]

I am currently struggling with making the right food choices and hope to

gain some support from others who have been in the same place before me.

Trust me......you are in the right place.......and WELCOME!!!!!!! P.

New Member

[Guest guest]

Welcome to the group . This is truly a great group.

About the eating snacks, I was actually told when I had surgery

that I would need to eat about 6 times a day. Since I could not and

would not be able to eat more then so much at a time, it is suppose to be

healthier. And, to be truthful, nutritionist have been saying that the 3

square meals a day is probably the unhealthiest way to live. If you look

at the diets of the people in Europe and Australia, they have three meals

a day and 2 to 3 " teas " . The teas are like miniature meals. I don't

hear about " a lot " of obesity in Europe and Australia. So don't worry

about the snacks. It may be necessary to maintain your weight and not

sabotage your success. Just my ever so humble opinion.

Again, welcome.

Lori Owen - Denton, Texas

CHF 4/14/01 479 lbs.

SRVG 7/16/01 401 lbs.

Current Weight 339.5 lbs. and loosing again

Dr. Ritter/Dr. Bryce

On Tue, 14 Jan 2003 18:12:42 -0000 " Meadows valm5687@...> "

valm5687@...> writes:

> Hello Everyone,

> My name is , I am 42 years old, and had WLS July 9th, 2001.

> My

> starting weight was 289 and I'm currently at 145, a loss of 144

> pounds.... Hurray.....

> I had my surgery at Palms of Pasadena in St. Pete, Fl, my doctor is

>

> Dr. . I have been very fortunate, I am like a poster

> child for this surgery, I have had no problems since having my

> surgery, I did have to have three hernia's repaired, but they were

> not from the WLS. I am having some issues with food, and how to

> moderate what I eat. I do not want to lose any more weight, this is

> a

> great size for me, and I feel great. I have had to start eating 2

> snacks a day to stop my weight loss. I am a little concerned that

> this may not be a good idea. I do not want snacking to turn into a

> bad thing for me down the road. Any help on this would be

> appreciated.

>

> Thanks so much,

> Meadows

> Surgery on July 9,2001

> Current weight: 145

> Palms of Pasadena, St.Pete

> Dr.

>

>

>

> Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

> Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

Hi and WELCOME......I think this would probably be my recommendation

also!! Instead of thinking of it as " snacking " maybe think of it as mini

meals. Plan for smaller versions of the same foods that you would eat for a

meal. This has helped me in the reasoning that if I think of it as a snack

then I go for the " snack " food i.e., junk. But if I think of it as a mini

meal I will make a better food choice. P.

eat about 6 times a day. Since I could not and

> would not be able to eat more then so much at a time, it is suppose to be

> healthier. And, to be truthful, nutritionist have been saying that the 3

> square meals a day is probably the unhealthiest way to live.

Re: New Member

[Guest guest]

Welcome . Sounds like you are doing terrific.

Lori Owen - Denton, Texas

CHF 4/14/01 479 lbs.

SRVG 7/16/01 401 lbs.

Current Weight 339.5 lbs. and loosing again

Dr. Ritter/Dr. Bryce

[Guest guest]

http://members.shaw.ca/kirasday/

What a beautiful little girl. I really enjoyed reading her story. Be sure to know, we are all hear to support you and this is a great place to vent, cry and share good news. Welcome to the group.

[Guest guest]

,

I loved the website and I wish you luck in raising money for Kira's Day!

Welcome to the list.

Kim - Mom to and Lindsey-(2) Partial Complex I

New Member

> Hi,

>

> My name is and I have a 11 month old daughter, Kira,

> tentatively diagnosed with Leigh's Disease. I have been reading most

> of the posts for the past 3 months, but have yet to share my family's

> story. Part of the reason for this is that the doctors did not

> believe Kira would live this long.

>

> Anyways, I wanted to introduce myself and thank you all for the

> support you have given through your words. I could relate to a lot

> of your experiences and find it comforting to be part of this

> community. As my daughter has defied the odds, we are now facing

> decisions that I know many of you can offer your wisdom about.

>

> We are in the process of arranging a fundraiser for our local

> hospital and have created a website about Kira and her story. If you

> are interested in reading more about Kira, and her struggle with

> Mitochondrial disease, please check out her website at

> http://members.shaw.ca/kirasday/

>

> Thanks again,

> Bekker

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Dear ,

I just visited your precious Kira’s

website. I want to thank you for the effort of a fundraiser to help our

children. My daughter died at age 8 of Leigh’s disease and my soon to be

7 year old Leanna has the same. I, too was lucky to see 8 years and 6 months of

health before Samya’s death. It took the doctors until 10 days before her

death to figure out what she had. I am familiar with that labored breathing you

are talking about that Kira had. Apparently, this is a major sign of the really

bad point of Leigh’s disease. Samya had this sound to her breathing for 5

days before she was intubated only to never come home and die 33 days later. I

would like to share my story with you . You can read it on Samya’s

memorial website at www.samya.org. I will

never ever forget the moment the doctor mentioned “Leigh’s disease”

I had never heard of it and then he proceeded to tell us that we were lucky

that Samya even lived this long. Thanks so much doc for the good news. Upon

reading your story, I found that we had much in common, although Samya’s

symptoms were not as severe as Kira’s as an infant. This is supposedly

why she was not diagnosed her entire life until on her death bed. I , too have

tried to have small fundraisers for the UMDF on occasions like Samya’s

birthday etc. Every little bit helps when we all add it up. I will pray for you

and your family. The road ahead is not easy, and we can all use prayers of help

along our journey.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: mom2kira2003

Sent: Wednesday, April 28, 2004

12:44 PM

To: Mito

Subject: New Member

Hi,

My name is and I have a 11 month old

daughter, Kira,

tentatively diagnosed with Leigh's Disease.

I have been reading most

of the posts for the past 3 months, but have yet

to share my family's

story. Part of the reason for this is that

the doctors did not

believe Kira would live this long.

Anyways, I wanted to introduce myself and thank

you all for the

support you have given through your words. I

could relate to a lot

of your experiences and find it comforting to be

part of this

community. As my daughter has defied the

odds, we are now facing

decisions that I know many of you can offer your

wisdom about.

We are in the process of arranging a fundraiser

for our local

hospital and have created a website about Kira and

her story. If you

are interested in reading more about Kira, and her

struggle with

Mitochondrial disease, please check out her

website at

http://members.shaw.ca/kirasday/

Thanks again,

Bekker

Please

contact mito-owner with any problems or questions.

[Guest guest]

Suhad,

Samya's website was the first one I visited when I initially joined this group. I was very touched by her story. Your girls are beautiful and the site is a wonderful tribute to Samya.

After reading the posts for the last few months, I already feel like I know you!

Jen

-----Original Message-----From: suhad1970@... Sent: Wednesday, April 28, 2004 2:44 PMTo: Mito Subject: RE: New Member

Dear ,

I just visited your precious Kira’s website. I want to thank you for the effort of a fundraiser to help our children. My daughter died at age 8 of Leigh’s disease and my soon to be 7 year old Leanna has the same. I, too was lucky to see 8 years and 6 months of health before Samya’s death. It took the doctors until 10 days before her death to figure out what she had. I am familiar with that labored breathing you are talking about that Kira had. Apparently, this is a major sign of the really bad point of Leigh’s disease. Samya had this sound to her breathing for 5 days before she was intubated only to never come home and die 33 days later. I would like to share my story with you . You can read it on Samya’s memorial website at www.samya.org. I will never ever forget the moment the doctor mentioned “Leigh’s disease” I had never heard of it and then he proceeded to tell us that we were lucky that Samya even lived this long. Thanks so much doc for the good news. Upon reading your story, I found that we had much in common, although Samya’s symptoms were not as severe as Kira’s as an infant. This is supposedly why she was not diagnosed her entire life until on her death bed. I , too have tried to have small fundraisers for the UMDF on occasions like Samya’s birthday etc. Every little bit helps when we all add it up. I will pray for you and your family. The road ahead is not easy, and we can all use prayers of help along our journey

[Guest guest]

Dear :

I read your website last night. I'm so sorry to hear about all that

Kira and your family have been through. Your love for her is so

evident. What beautiful scrapbook pages, such a beautiful

demonstration of your love for her. I'm so glad you posted.

Cindy (mom to Seth (12) and Ben (8) both mitochondrial disease)

> Hi,

>

> My name is and I have a 11 month old daughter, Kira,

> tentatively diagnosed with Leigh's Disease. I have been reading

most

> of the posts for the past 3 months, but have yet to share my

family's

> story. Part of the reason for this is that the doctors did not

> believe Kira would live this long.

>

> Anyways, I wanted to introduce myself and thank you all for the

> support you have given through your words. I could relate to a lot

> of your experiences and find it comforting to be part of this

> community. As my daughter has defied the odds, we are now facing

> decisions that I know many of you can offer your wisdom about.

>

> We are in the process of arranging a fundraiser for our local

> hospital and have created a website about Kira and her story. If

you

> are interested in reading more about Kira, and her struggle with

> Mitochondrial disease, please check out her website at

> http://members.shaw.ca/kirasday/

>

> Thanks again,

> Bekker

[Guest guest]

Hi. I just joined this group. I need to have my underbite

corrected. Can anyone reccomend a doc in New York City?

Thanks,

Dorothy

[Guest guest]

Wayne- my name is Matt- I live in seattle and also

have Sarcoids- I just got SS to give me disabity after

a 3 year fight- was wondering if u were using a

lawyer- it may help u a lot to get a disability lawyer

to help-U only pay them if u win and they take a part

of your back pay awards- also do u mind if i ask what

state u are in- most sttes have programs to help those

who cant pay for there meds- check with your local

welfare dept- they should be able to help u with meds-

also they may help u deal with SS because if u win

they get paid back by social security for any help

they give u if u get disability- I am a former social

worker so if there is anything i can do to help please

feel free to ask = MATT in Seattle

--- Connie Griffis conaugusta@...> wrote:

> Hello Wayne,

>

> Welcome to the best bunch of people you would ever

> want to know. The only drawback is we all have

> sarc.

>

> Now to the question, medication can be obtained from

> NeedyMeds.com. when you don't have insurance. All

> you

> have to do is pull up the site, pick the medication

> you are on and pull the info on how to apply for it.

>

> The other place you might want to look into if you

> are

> still in the work arena is voc rehab for medical &

> prescription help. They are a state agency, tax

> based

> so you have already paid for the services, and they

> are great.

>

> Hope the info helps, and hope your doing better

> soon.....Connie (Florida)

>

> --- Wayne greydragon_69@...> wrote:

>

> > Hello, I was diagnosed with neurosarcoid over a

> year

> > ago, and have

> > been on prednisone for that time. Docters tried

> > Imuran but side

> > effects were overwhelming, and so I was put on

> > methotrexate about

> > three months ago, but my most recent MRI indicates

> > that I have stopped

> > responding to treatment and I have no insurance is

> > there anywhere I

> > can find some sort of help. Oh, yeah Social

> > security has continued to

> > deny my claim, any help with that would be

> > appreciated as well.

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Matt, I am currently working with a disability law firm and they are

working with SSI on my disability case, as for my state my typical

response would be denial, but Texas would be the actual answer. I

have had to bite the bullet and find a someone who would allow me to

work for them... given my current situation not an easy task but I

succeeded and can to an extent pay my bills for now but I am

concerned about how this will affect my disability case.

Thank you for your assistance, Wayne

> >

> > > Hello, I was diagnosed with neurosarcoid over a

> > year

> > > ago, and have

> > > been on prednisone for that time. Docters tried

> > > Imuran but side

> > > effects were overwhelming, and so I was put on

> > > methotrexate about

> > > three months ago, but my most recent MRI indicates

> > > that I have stopped

> > > responding to treatment and I have no insurance is

> > > there anywhere I

> > > can find some sort of help. Oh, yeah Social

> > > security has continued to

> > > deny my claim, any help with that would be

> > > appreciated as well.

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Wayne-Good luck with your case-I also was in the

same predicament - turned down from SSDI but not able

to work-My lawyers told me i couldnt work so i had to

do some under the table work and borred a lot of

money from my brothers and sisters-Does Texas have any

state programs that can help you- if there is

anything i can do to help u please let me know- I

would be willing to see if Texas has any programs that

could help you- Take care and please let us know how

you are doing MATT

--- Wayne greydragon_69@...> wrote:

> Matt, I am currently working with a disability law

> firm and they are

> working with SSI on my disability case, as for my

> state my typical

> response would be denial, but Texas would be the

> actual answer. I

> have had to bite the bullet and find a someone who

> would allow me to

> work for them... given my current situation not an

> easy task but I

> succeeded and can to an extent pay my bills for now

> but I am

> concerned about how this will affect my disability

> case.

> Thank you for your assistance, Wayne

>

> > >

> > > > Hello, I was diagnosed with neurosarcoid over

> a

> > > year

> > > > ago, and have

> > > > been on prednisone for that time. Docters

> tried

> > > > Imuran but side

> > > > effects were overwhelming, and so I was put on

> > > > methotrexate about

> > > > three months ago, but my most recent MRI

> indicates

> > > > that I have stopped

> > > > responding to treatment and I have no

> insurance is

> > > > there anywhere I

> > > > can find some sort of help. Oh, yeah Social

> > > > security has continued to

> > > > deny my claim, any help with that would be

> > > > appreciated as well.

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

Wayne, have you looked up Needymeds.com on the computer, or contacted your local health department?....ConnieWayne wrote: Matt, I am currently working with a disability law firm and they are working with SSI on my disability case, as for my state my typical response would be denial, but Texas would be the actual answer. I have had to bite the bullet and find a someone who would allow me to work for them... given my current situation not an easy task but I succeeded and can to an

extent pay my bills for now but I am concerned about how this will affect my disability case. Thank you for your assistance, Wayne > > > > > Hello, I was diagnosed with neurosarcoid over a> > year> > > ago, and have > > > been on prednisone for that time. Docters tried> > > Imuran but side > > > effects were overwhelming, and so I was put on> > > methotrexate about > > > three months ago, but my most recent MRI indicates> > > that I have stopped > > > responding to treatment and I have no insurance is> > > there anywhere I > > > can find some sort of help. Oh, yeah Social> > > security has continued to > > > deny my claim, any help with that would be> > > appreciated as

well.> > > > > > > > > > > > > > > > > > > > > __________________________________________________> >

[Guest guest]

Don't forget to hit up your docs for free samples; they don't always offer.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: new memberDate: Fri, 25 Aug 2006 14:23:52 -0700 (PDT)

Wayne, have you looked up Needymeds.com on the computer, or contacted your local health department?....ConnieWayne <greydragon_69 (AT) yahoo (DOT) com> wrote:

Matt, I am currently working with a disability law firm and they are working with SSI on my disability case, as for my state my typical response would be denial, but Texas would be the actual answer. I have had to bite the bullet and find a someone who would allow me to work for them... given my current situation not an easy task but I succeeded and can to an extent pay my bills for now but I am concerned about how this will affect my disability case. Thank you for your assistance, Wayne > > > > > Hello, I was diagnosed with neurosarcoid over a> > year> > > ago, and have > > > been on prednisone for that time. Docters tried> > > Imuran but side > > > effects were overwhelming, and so I was put on> > > methotrexate about > > > three months ago, but my most recent MRI indicates> > > that I have stopped > > > responding to treatment and I have no insurance is> > > there anywhere I > > > can find some sort of help. Oh, yeah Social> > > security has continued to > > > deny my claim, any help with that would be> > > appreciated as well.> > > > > > > > > > > > > > > > > > > > > __________________________________________________> >