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Re: HELP PLEASE

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Hi Jane,

Well you have come to the right place, we all feel for you. This is a

poorly understood disorder and very few doctors have any good ideas

on how to treat it. That doesn't mean you should give up though,

you're just going to have to keep going to doctors (and usually

regular ob/gyns are of no help) untill one of them finds out what is

causing your pain. I ended up having to go see a reproductive

endocrinologist/gynecologist before I was diagnosed as having food

and hormone allergies. The cure is out there, it is just dang hard to

find.

in SF

> Hi,

>

> My name is Jane I am a new member from the UK.

>

> I am looking for help as I have been suffering from constant vulval

soreness and pain for the last 18 months. I've seen many so called

experts and had an op to remove some vestibular glands but it did not

work. I have intense pain, soreness and burning when I ovulate and

get worse again when I have a period, so far I know it's something to

do with the increase of oestrogen in my monthly cycle but no one can

help me and I can find no one else who suffers my symptoms.

>

> I would be very grateful for a reply as this is really getting me

down, it has affected every part of my life including my relationship

and I am feeling so desperate.

>

> Jane xxx

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rebecca,

I had my first phone consult with Dr. Cook last night, what an awsome conversation. for the first time in 2 years I hung up with some hope and not feeling like I was insane. He suspects from my history that I have some hormonal allergies, I think I actually rushed through the phone call, not used to someone giving me that much attention. Friday I set up my appointments there with the nurse.

tell me, when you went did they also check, vaginal discharge for imbalances ect.? that was one thing I failed to talk about, wondering if I have become hyper sensitive to my own discharge because it has definatly changed color and substance since this started. It stings when it touches the vulva, and I am at my worst when estrogen levels are highest.

DsP

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Hi,

Well, the only thing you can do now is keep trying things. Do you

like the doc that did the surgery? Could you go back to him or find

a specialist? How many doctors have you seen about this. I'm sorry

I can't help you much. Keep writing to us and I'm sure we can help

you.

Love,

Ruth

> Hi,

>

> My name is Jane I am a new member from the UK.

>

> I am looking for help as I have been suffering from constant vulval

soreness and pain for the last 18 months. I've seen many so called

experts and had an op to remove some vestibular glands but it did not

work. I have intense pain, soreness and burning when I ovulate and

get worse again when I have a period, so far I know it's something to

do with the increase of oestrogen in my monthly cycle but no one can

help me and I can find no one else who suffers my symptoms.

>

> I would be very grateful for a reply as this is really getting me

down, it has affected every part of my life including my relationship

and I am feeling so desperate.

>

> Jane xxx

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Hi Ruth,

Thanks for your reply. The doc that did the surgery has admitted running out

of things to try so I can't go back to him, the troubling thing is he is a

Professor of gynaecology and should be able to give me more help! I have

been to 2 gynaecologists, 2 dermatologists, 3 local doctors also the GU

clinic at the hospital and a homeopathic doctor so I have seen many people.

I am now being referred to another gynaecologist (waiting for appointment)

and am going for a blood test to check hormone levels. After that I will try

the pill to see if it stops my peaks of soreness and pain during the monthly

cycle. I live in the UK but have joined this group looking for other ideas

of things to try. Today I have been prescribed Ovestin cream to relieve the

dryness I have and Fluoxetine which has just been licensed in the UK to

treat PMT problems, it's a long shot but I am willing to try anything my

doctor suggests.

Thanks again

Jane xxx

Re: Help Please

> Hi,

> Well, the only thing you can do now is keep trying things. Do you

> like the doc that did the surgery? Could you go back to him or find

> a specialist? How many doctors have you seen about this. I'm sorry

> I can't help you much. Keep writing to us and I'm sure we can help

> you.

> Love,

> Ruth

>

>

> > Hi,

> >

> > My name is Jane I am a new member from the UK.

> >

> > I am looking for help as I have been suffering from constant vulval

> soreness and pain for the last 18 months. I've seen many so called

> experts and had an op to remove some vestibular glands but it did not

> work. I have intense pain, soreness and burning when I ovulate and

> get worse again when I have a period, so far I know it's something to

> do with the increase of oestrogen in my monthly cycle but no one can

> help me and I can find no one else who suffers my symptoms.

> >

> > I would be very grateful for a reply as this is really getting me

> down, it has affected every part of my life including my relationship

> and I am feeling so desperate.

> >

> > Jane xxx

>

>

> *****END OF MESSAGE*****

> -------------------------------------------------

> To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

> *****

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Jane,

Have you been checked to see if you have cyclic vaginosis? That would be

too much lactobacillus. Increases in symptoms during menstration is one of

the symptoms.

Bunny /| |\

. .

( ! )

Reply-To: VulvarDisorders

To: <VulvarDisorders >

Subject: Re: Re: Help Please

Date: Wed, 17 Oct 2001 12:34:54 +0100

Hi Ruth,

Thanks for your reply. The doc that did the surgery has admitted running out

of things to try so I can't go back to him, the troubling thing is he is a

Professor of gynaecology and should be able to give me more help! I have

been to 2 gynaecologists, 2 dermatologists, 3 local doctors also the GU

clinic at the hospital and a homeopathic doctor so I have seen many people.

I am now being referred to another gynaecologist (waiting for appointment)

and am going for a blood test to check hormone levels. After that I will try

the pill to see if it stops my peaks of soreness and pain during the monthly

cycle. I live in the UK but have joined this group looking for other ideas

of things to try. Today I have been prescribed Ovestin cream to relieve the

dryness I have and Fluoxetine which has just been licensed in the UK to

treat PMT problems, it's a long shot but I am willing to try anything my

doctor suggests.

Thanks again

Jane xxx

Re: Help Please

> Hi,

> Well, the only thing you can do now is keep trying things. Do you

> like the doc that did the surgery? Could you go back to him or find

> a specialist? How many doctors have you seen about this. I'm sorry

> I can't help you much. Keep writing to us and I'm sure we can help

> you.

> Love,

> Ruth

>

>

> > Hi,

> >

> > My name is Jane I am a new member from the UK.

> >

> > I am looking for help as I have been suffering from constant vulval

> soreness and pain for the last 18 months. I've seen many so called

> experts and had an op to remove some vestibular glands but it did not

> work. I have intense pain, soreness and burning when I ovulate and

> get worse again when I have a period, so far I know it's something to

> do with the increase of oestrogen in my monthly cycle but no one can

> help me and I can find no one else who suffers my symptoms.

> >

> > I would be very grateful for a reply as this is really getting me

> down, it has affected every part of my life including my relationship

> and I am feeling so desperate.

> >

> > Jane xxx

>

>

> *****END OF MESSAGE*****

> -------------------------------------------------

> To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

> *****

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> Hi,

>

> My name is Jane I am a new member from the UK.

>

> I am looking for help as I have been suffering from constant vulval

soreness and pain for the last 18 months. I've seen many so called

experts and had an op to remove some vestibular glands but it did not

work. I have intense pain, soreness and burning when I ovulate and get

worse again when I have a period, so far I know it's something to do

with the increase of oestrogen in my monthly cycle but no one can help

me and I can find no one else who suffers my symptoms.

>

> I would be very grateful for a reply as this is really getting me

down, it has affected every part of my life including my relationship

and I am feeling so desperate.

>

> Jane xxx

Jane---could be Cyclic Vulvoganitis---

You are right about hormones and your cycle BUT it would not be an

increase in estrogen but rather a DECREASE in estrogen from ovulation

to period starting that would aggrivate yeast. Did you take

antibiotics prior to your burning?

I have had doctors say I have yeast but not enough to call an

" infection " . You need a certain number in the colony to be given the

" yeast infection " diagnosis. YET for some, only a couple or even one

is enough to cause problems if you are 1) allergic to candida (yeast)

or 2) sensitive to it.

You can have an allergy test done or see if your doctor will let you

try antifungals from ovulation to your period for a few months to see

if you improve.

We have high estrogen/low progesterone for the first half of the month

then it turns and is high progesterone/low estrogen the second half of

the month. When you have your period--both drop. Usually burning

relief is not felt till about the 3rd day of bleeding if you have CV.

Anyway--here is some info. What it is saying is that to be tested for

yeast you need to go when you have the least amount of burning for

some reason. Many times, yeast is negative but if you have one or two

for you this could be POSITIVE.

I'm not making much sense here---you can read for yourself and then do

a search on it as well.

Good luck,

Lynn

--------------

Cyclic Vulvovaginitis

Cyclic vulvovaginitis (CVV) is probably the most common cause of

vulvodynia. Pain is typically cyclic, being worst during the luteal

phase of the menstrual cycle. Pain onset in relation to coitus is

characteristic, i.e. symptoms flare up after intercourse, and pain is

usually worst the next day.3,9 Traditional courses of antimycotics

give temporary relief, but symptoms recur soon after the treatment.

Findings of CVV on speculum examination or colposcopic examination are

within normal limits, except that the swab test is usually positive.

CVV is thought to be caused by a hypersensitivity reaction to Candida

antigen.3,9 However, Candida cannot be detected during the symptomatic

phase because of the body's immune response. If one is seeking

microbiological proof for the diagnosis of CVV, culture specimens for

Candida should be obtained during an asymptomatic phase. Prolonged

maintenance therapy with antimycotics, topically or systematically, is

usually effective, Therapy should be continued three times per week

for up to three months.

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> Jane,

>

> Have you been checked to see if you have cyclic vaginosis? That

would be

> too much lactobacillus. Increases in symptoms during menstration is

one of

> the symptoms.

>

> Bunny /| |\

> . .

> ( ! )

>

>

>

I think meant: Cytolytic Vaginosis

Cytolytic Vaginosis

Cytolytic vaginosis is caused by an overgrowth if lactobacilli.

Symptoms are very similar to those of women with vulvovaginal

candidiasis, i.e. itching, burning, whitish discharge, dyspareunia and

external dysuria. Symptoms are cyclic, and usually become worse during

the luteal phase. Most patients have been treated multiple times for

vulvovaginal candidiasis although the diagnosis has not been confirmed

by culture or other confirmatory tests. Before making the diagnosis of

cytolytic vaginosis it is important to exclude other aetiologies.

Examination usually shows whitish discharge and low vaginal pH

(3.5-4.0). Findings on wet mount examination characteristically show

heavy overgrowth of lactobacilli and disrupted epithelial cells

(i.e. cytolysis) in the absence of Candida, clue cells or leucocytes.

Sometimes heavily overgrown lactobacilli appear as 'false clue cells'

when lactobacilli cover epithelial cells mimicking clue cells.

Treatment is directed toward reducing the quantity of lactobacilli.

One recommendation is vaginal douching with sodium bicarbonate

(baking soda) solution (50 g of sodium bicarbonate in one litre of

warm water) two to three times a week when needed. Careful counselling

cannot be overemphasized: assurance of the physiological nature of

the condition assists the patient to cope with the problem.

-----------------------------------------

Luteal phase is from ovulation to your period starting.

Lynn

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Lynn,

Have you any idea if this Cytolytic Vaginosis symptoms include vulval

swelling too? every time I ovulate I swell up sometimes I can't walk or sit

the swelling is so hard, it makes the soreness and burning hurt even more

and lasts about 7 days. The strange thing is I never swell when I have a

period. I did have a diagnosis early on of an an-aerobic infection and I had

2 lots of something called Metronidazole (I think that was the name) but it

actually made my soreness and swelling worse, so this got ruled out. Any

ideas?

Jane xxx

Re: Help Please

>

> > Jane,

> >

> > Have you been checked to see if you have cyclic vaginosis? That

> would be

> > too much lactobacillus. Increases in symptoms during menstration is

> one of

> > the symptoms.

> >

> > Bunny /| |\

> > . .

> > ( ! )

> >

> >

> >

>

> I think meant: Cytolytic Vaginosis

>

> Cytolytic Vaginosis

> Cytolytic vaginosis is caused by an overgrowth if lactobacilli.

> Symptoms are very similar to those of women with vulvovaginal

> candidiasis, i.e. itching, burning, whitish discharge, dyspareunia and

> external dysuria. Symptoms are cyclic, and usually become worse during

> the luteal phase. Most patients have been treated multiple times for

> vulvovaginal candidiasis although the diagnosis has not been confirmed

> by culture or other confirmatory tests. Before making the diagnosis of

> cytolytic vaginosis it is important to exclude other aetiologies.

> Examination usually shows whitish discharge and low vaginal pH

> (3.5-4.0). Findings on wet mount examination characteristically show

> heavy overgrowth of lactobacilli and disrupted epithelial cells

> (i.e. cytolysis) in the absence of Candida, clue cells or leucocytes.

> Sometimes heavily overgrown lactobacilli appear as 'false clue cells'

> when lactobacilli cover epithelial cells mimicking clue cells.

> Treatment is directed toward reducing the quantity of lactobacilli.

> One recommendation is vaginal douching with sodium bicarbonate

> (baking soda) solution (50 g of sodium bicarbonate in one litre of

> warm water) two to three times a week when needed. Careful counselling

> cannot be overemphasized: assurance of the physiological nature of

> the condition assists the patient to cope with the problem.

> -----------------------------------------

> Luteal phase is from ovulation to your period starting.

>

> Lynn

>

>

>

> *****END OF MESSAGE*****

> -------------------------------------------------

> To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

> *****

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Sorry I was typing too fast, I did mean Cytolytic Vaginosis. Sorry about

the confusion. Thats a word I have to think about when I am typing:)

Bunny /| |\

. .

( ! )

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: Re: Help Please

Date: Fri, 19 Oct 2001 18:12:11 -0000

> Have you been checked to see if you have cyclic vaginosis? That

would be too much lactobacillus.

I think meant: Cytolytic Vaginosis

Cytolytic Vaginosis

Cytolytic vaginosis is caused by an overgrowth if lactobacilli.

Symptoms are very similar to those of women with vulvovaginal

candidiasis, i.e. itching, burning, whitish discharge, dyspareunia and

external dysuria. Symptoms are cyclic, and usually become worse during

the luteal phase. Most patients have been treated multiple times for

vulvovaginal candidiasis although the diagnosis has not been confirmed

by culture or other confirmatory tests. Before making the diagnosis of

cytolytic vaginosis it is important to exclude other aetiologies.

Examination usually shows whitish discharge and low vaginal pH

(3.5-4.0). Findings on wet mount examination characteristically show

heavy overgrowth of lactobacilli and disrupted epithelial cells

(i.e. cytolysis) in the absence of Candida, clue cells or leucocytes.

Sometimes heavily overgrown lactobacilli appear as 'false clue cells'

when lactobacilli cover epithelial cells mimicking clue cells.

Treatment is directed toward reducing the quantity of lactobacilli.

One recommendation is vaginal douching with sodium bicarbonate

(baking soda) solution (50 g of sodium bicarbonate in one litre of

warm water) two to three times a week when needed. Careful counselling

cannot be overemphasized: assurance of the physiological nature of

the condition assists the patient to cope with the problem.

-----------------------------------------

Luteal phase is from ovulation to your period starting.

Lynn

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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Jane,

I'm sure you've already had a slew of replies to your email. I'm so, so

sorry for your pain and can very much relate. Do you know what brought it

on? I've been suffering for 3 1/2 years due to a suppository I was given for

a bacterial infection. Have you tried the low oxalate diet? I've found it

to be somewhat helpful. I'm also using Ox-Absorb, NAG and Estrace cream.

How's that for comprehensive. I've found them all helpful enough to keep

using them, but I'm not pain free. YET!! I haven't been using the Estrace

for very long, about two weeks, but think it might be a good thing. Oh, I'm

also using a natural testosterone cream. There are sooo many things to try

and everyone is different. Wish I could send you a magic pill! Any

questions about the above remedies, please let me know!! I also find a cool

bath helpful.

Take care,

Susie

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  • 3 months later...

I have used glycerin suppositories in the past. Also milk of mag has also

worked for us. We used to battle constipation all the time, now I just give

Senakot every other day. Seems to keep him regular with no long term

effects. Knock on wood.

Marie, mom to

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Mineral oil is gross, but it might help in an emergency.

Bill

> Pam wrote:

>

> is backed right up. She is vomitting, too high ketosis....black

> on the stick. She won't eat or drink. I'm positive she is severely

> constipated.

>

> I need the name of an enema I can use with her that is safe on this

> diet to get her going and then I will head out and get some pysillium

> husks. Can someone refresh me on what is the best again?

>

> In the mean time, what enema's do you recommend?

>

> I have given her 50ml of orange juice 3 times today and she is still

> black on the stick. I'm not feeling to good about things right now.

>

> Pam

>

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Pysillium husk powder is best as it mixes better and you can use it as

a thickener for soups puddings and hot chocolate. I use a blending

wand to mix it-mix it well or it clumps and looks like boogers and is

a gross texture. Don't know about the other issue-Jen tens more

towards diarea.

Joan

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We used apple juice instead of orange juice when Macie's ketones

were too high and she was vomiting very often. The orange juice is

harder on their queasy stomachs, and Macie couldn't keep it down.

It seems the apple juice stayed in long enough to get ketones down a

bit. It is a vicious vomiting cycle if the ketones won't come down.

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We were told to use lemonade - that worked well for us.

Jill

At 10:37 AM 2/13/02, you wrote:

>We used apple juice instead of orange juice when Macie's ketones

>were too high and she was vomiting very often. The orange juice is

>harder on their queasy stomachs, and Macie couldn't keep it down.

>It seems the apple juice stayed in long enough to get ketones down a

>bit. It is a vicious vomiting cycle if the ketones won't come down.

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

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Thanks Jill...I'll definitely remember lemonade if we need it again

(hopefully not) Lemonade is one thing my queasy pregnant tummy could

always handle, so it makes sense to use it for this, too.

Glenna

> >We used apple juice instead of orange juice when Macie's ketones

> >were too high and she was vomiting very often. The orange juice is

> >harder on their queasy stomachs, and Macie couldn't keep it down.

> >It seems the apple juice stayed in long enough to get ketones down

a

> >bit. It is a vicious vomiting cycle if the ketones won't come

down.

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

last

> > resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> > professional keto team!

> > Subscribe: ketogenic-subscribe@y...

> > Unsubscribe: ketogenic-unsubscribe@y...

> >

> >

> >

> >

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  • 2 weeks later...

So sorry to hear what you are going through. I do remeber our doc telling me that these viruses are running 10-14 days!!! I just wanted to be sure se isn't getting an IV with glucose water or anything like that! Hope all goes well! Tina

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With sickness the glucose can change just with the change in metabolism,

independent of how you are working with the diet. That said, calories

can be decreased with less energy when sick. Also, do you just give RCF

and Microlipid? Shouldn't there be carbohydrate there as well?

The loss in weight would normally indicate calories too low, but with

the flu that may not be the case. I lost 11 pounds in 5 days myself!

Bill

Ketomommie@... wrote:

>

> Marissa is in the hospital due to status seizures. I can't figure out what

> the heck is going on. If anyone has any insights, please please let me know.

> She had the stomach flu two weeks ago and started seizing after that. I

> would think that if that was the only cause, she would be getting better by

> now, not worse.

> Her band (no idea if that's spelled right) count is very high, but straight

> white blood cells are fine. The ped said that indicates a significant

> infection, although she has no symptoms of any kind. I asked if it could

> still be the stomach virus and he said yes. Glucose was 83 this morning

> before any formula. That's pretty high for a keto kid, isn't it? Blood

> ketones this morning were 45 on the bioscanner and small from the hospital

> lab- this should be fine for Marissa. As the day went on, I increased the

> fat in her formula and her ketones went DOWN. She doesn't always get

> formula, just on going to bed and when she is unable to eat due to seizures

> (through gtube). Other times she eats orally. The formula is RCF and

> Microlipid. I'm wondering if there is a problem with it. Her seizures

> invariably start at night after formula. But I read the ingredients and

> don't see anything there. Anyone have any problems with the formula?

> she lost 4 pounds in the last two weeks, no vertical growth

> no lotions or soaps that haven't been tried and true

> I would love to be able to start the day tomorrow with a plan- please give

> any thoughts whatsoever. Diastat is not working anymore.

> Jen

>

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  • 2 months later...
Guest guest

Rita - since you were part of the "before PLS on the web", how

did you find out about PLS and who did you contact? Now,

I'm thinking I remember, that you once said you called NORD

but now I don't remember what then.......?

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Guest guest

Do you help from " old people like me " ? If so what can I do to

contribute?

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

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Guest guest

Don't forget Dr. Floeter at NIH- she had called for study participants

one year but could not get a large enough sample to continue.

Initial contacts with her were negative but Sue Niquette called directly

and cajoled her into reevaluating the feasibility of resuming the

research. Many of the folks who volunteered to go to

Washington were recruited through PLS- friends. Also I think 2000

was when PLS- News got started with the intent of not being so

" chatty "

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Guest guest

:

I found out about PLS, when I was given the diagnosis by a neurologist

at the Lahey Clinic, Burlington, Massachusetts, just outside of Boston.

As for actually finding information relative to PLS, believe it or not.

it was staff of the Multiple Sclerosis (New Hampshire Chapter), that did

the research for me, and sent me tons of info they had received from

Dartmouth Medical Center, here in NH. In that information there was an

article about Levey. I did contact him, and he started to send me

his newsletter as it was published. Everything was done by mail back

then (no computer's). I can't remember how I found out about NORD, but

I wrote to them, and they sent me a list of names (about 10) so I sent

out a blanket letter to all of them. Thats how I met my dear friend Joe

Alberstadt and thru Joe I met Mark and the rest is history.

I am sitting here picking my brain (and at my age I really gotta pick).

When I was given the diagnosis I reached a low, where I contemplated

suicide. I called a crises Hot line, and I think they gave the name of

NORD.

How lucky this group is to be able to find this PLS Group. If I had

them 15 years ago, I could have approached this disease from a more

positive approach.

Sorry I am starting to babble!

Hope this helps!

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

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Guest guest

Thanks, Rita. Stories such as yours will surely make the post-PLS

website members realize how lucky they are in being able to find

this wonderful group from the beginning (or close to it).

Even if I don't get many responses, I'm hoping that members will

appreciate our history as it unfolds.

Gentner

and Happy Cinco de Mayo

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