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I just have to make a comment on this post from . Where else would you get personal care from someone who knows what he is talking about, like this? He is willing to give out his home phone number to a complete stranger and do what he can for him in the way of advice and someone to just talk to. I don't think that 's gesture should be taken for granted and I think it is a good time to say how kind a man he is.>> > , if you would like I could call you and talk this over and give my > perspective on what is going on and will in the future. You also may call me > anytime and I will try and answer any questions you have. My home phone is > 01638 533018.> > > > > > in Suffolk> > > > In a message dated 4/22/2006 9:35:22 PM GMT Standard Time, lawford@... > writes:> > (the computer lost my first attempt so lets try again.> > I am a 34 yo male living near Bournemouth on the south coast of England.> > I was diagnosed last month with A but wonder how long I have had this > condition.> > Today I learn that the chronic acid indigestion I have suffered for the past > 14 years may > actually be spasms. In the past I have had really bad chest pain that the > doctor gave me > antacids for but they did not touch the sides. The pain used to cause pains > down my left > arm during the day but more recently caused me to wake with aching throat > and teeth > (both with severe chest pain).> > 3 or 4 years ago I began having problems getting food down and eating a > lunchtime buffet > would cause a tear and some panic trying to fight/keep the food down.> > 18 months ago I had an gastroscopy but they found nothing ( I think this was > due to the > weight loss diet I was on - cambridge diet - i.e. no solids). The reason for > the test was > that I was finding it hard to swallow food.> > By Christmas 2005 I was having real difficulty eating, and on many occasions > would not be > able to east a meal. I had a barium test early 2006, the lady that > performed the test was > most surprised by the lack of any barium movement saying 'well that > shouldn't be like that > - not at your age'.> A few weeks later I had another gastroscopy by the same doctor, this time he > explained > that he was now sure that I had A - but to be 100% he sent me for an > manometry where > the doctor commented that the doctor who sent me was not always correct in > his > assessment, but this time he was, there was no doubt I had A.> > I am now waiting to see a specialist/surgeon at the end of May.> > Reading these board there are many degrees of what A is and how it effects > us.> > I currently have evenings that I find hard to get much food down. But other > nights I can eat > a whole meal with no problems.> > Breakfast (a small bowl of muesli) causes slight chest pain but goes down.> > I have a real bad problem with liquids (hot and cold).> > Having liquid with a meal just does not help, and just makes the fight worse.> > When fighting the swallowed food, most times I find it easier to regurgitate > than > continuing the fight (that can go on for 2 - 3 hours).> > So my questions are:> > 1. Is this about as bad as it gets? although I do see reports on here of > people who can not > eat or drink at-all - can I expect this?> > 2. Are these spasms? or indigestion? how to tell?> > 3. in UK under NHS can we choose surgeon or just have to take what we are > offered? ( If > we can choose anybody have any suggestions (South UK)?> > 4. I have tried to keep a perspective of this whole thing, A is not in > itself life threatening/> terminal, and I hope to lead a normal life after surgery. I suppose this > question is, long > term is it always on your mind/ in your head or can you just live life?> > 5. With the problem of regurgitating food in your sleep (only done this a > couple of times) > would one of the adjustamatic beds help that can keep your top end raised? > (for those in > UK no VAT on adjustamatic for health)> > Thanks for any replies in advance.> > > :oD> > > > > > >

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> 3. in UK under NHS can we choose surgeon or just have to take what

we are offered?

The simple answer to this is YES! It is called 'Choose and Book'

http://www.chooseandbook.nhs.uk/patients

" Choose and Book is a new service that allows you to choose your

hospital or clinic and book an appointment with a specialist. Since

summer 2004, Choose and Book has been introduced across England. It

will eventually be available to all patients. From 1 January 2006,

when you and your GP agree that you need to see a specialist, you will

be able to choose from at least four hospitals or clinics. You will

also be able to choose the date and time of your appointment. "

--

Sue

Mum to Stephi, 9yo

Nottm, UK

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Guest guest

I've been so busy preparing for my upcoming surgery that I haven't

had time to write. I just read this response. , you're the

greatest!

-Aileen

> >

> I am a 34 yo male living near Bournemouth on the south coast of

England.

> I was diagnosed last month with A but wonder how long I have had

this

> condition.

> Today I learn that the chronic acid indigestion I have suffered

for the

> past 14 years may actually be spasms. In the past I have had

really bad

> chest pain that the doctor gave me antacids for but they did not

touch

> the sides. The pain used to cause pains down my left arm during

the day

> but more recently caused me to wake with aching throat and teeth

(both

> with severe chest pain).

> 3 or 4 years ago I began having problems getting food down and

eating a

> lunchtime buffet would cause a tear and some panic trying to

fight/keep

> the food down.

> 18 months ago I had an gastroscopy but they found nothing ( I

think this

> was due to the weight loss diet I was on - cambridge diet - i.e. no

> solids). The reason for the test was that I was finding it hard to

> swallow food.

> By Christmas 2005 I was having real difficulty eating, and on many

> occasions would not be able to east a meal. I had a barium test

early

> 2006, the lady that performed the test was most surprised by the

lack of

> any barium movement saying 'well that shouldn't be like that -

not at

> your age'.

> A few weeks later I had another gastroscopy by the same doctor,

this

> time he explained that he was now sure that I had A - but to be

100% he

> sent me for an manometry where the doctor commented that the

doctor who

> sent me was not always correct in his assessment, but this time he

was,

> there was no doubt I had A.

> I am now waiting to see a specialist/surgeon at the end of May.

> Reading these board there are many degrees of what A is and how it

> effects us.

> I currently have evenings that I find hard to get much food down.

But

> other nights I can eat a whole meal with no problems.

> Breakfast (a small bowl of muesli) causes slight chest pain but

goes

> down.

> I have a real bad problem with liquids (hot and cold).

> Having liquid with a meal just does not help, and just makes the

fight

> worse.

> When fighting the swallowed food, most times I find it easier to

> regurgitate than continuing the fight (that can go on for 2 - 3

hours).

> So my questions are:

>

> 1. Is this about as bad as it gets? although I do see reports on

here of

> people who can not eat or drink at-all - can I expect this?

> 2. Are these spasms? or indigestion? how to tell?

>

> 3. in UK under NHS can we choose surgeon or just have to take what

we

> are offered? ( If we can choose anybody have any suggestions

(South

> UK)?

> 4. I have tried to keep a perspective of this whole thing, A is

not in

> itself life threatening/ terminal, and I hope to lead a normal

life

> after surgery. I suppose this question is, long term is it always

on

> your mind/ in your head or can you just live life?

> 5. With the problem of regurgitating food in your sleep (only done

this

> a couple of times) would one of the adjustamatic beds help that

can keep

> your top end raised? (for those in UK no VAT on adjustamatic for

health)

>

> Thanks for any replies in advance.

> >

> >

> > :oD

> >

>

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Wow, , that is quite a story! What a journey you have been on! Zoe

============================

That's the "Reader's Digest Condensed" version. There is SOOOOO much more to that story. It has been a HUGE journey through h*ll & back. The things the Dr's have done and said to me is shocking and pathetic. They are so nonchalant about doling out radiation and drugs to "fix" you. That is why I am so determined to find a better way. :)

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you are so so right. I work with mentally retarded adults (hypothyroid and iodine deficiency is the #1 cause of mental retardation/Down Syndrome). The idiot docs have these people on all kinds of drugs, but no thyroid meds. It is unbelievably shocking b/c the research on this was done 100 years ago. I actually feel embarassed for these docs sometimes, they are just glorified drug reps. Not to mention my own horrendous story, 30 years of misery and no meds after a partial thyroidectomy when I was severely hypo to begin with. I can hardly believe it happened to me.

Gracia

============================

That's the "Reader's Digest Condensed" version. There is SOOOOO much more to that story. It has been a HUGE journey through h*ll & back. The things the Dr's have done and said to me is shocking and pathetic. They are so nonchalant about doling out radiation and drugs to "fix" you. That is why I am so determined to find a better way. :)

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.385 / Virus Database: 268.5.1/327 - Release Date: 4/28/2006

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Checked by AVG Free Edition.

Version: 7.1.385 / Virus Database: 268.5.1/327 - Release Date: 4/28/2006

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  • 5 months later...

Hi Group, I wrote a couple of months ago a story on my daughter , with the results of embryonic stem cells therapy, I am writing to give you an update on her progress. We went back in June of this year to do another round of stem cells in the Dominican Republic, and is now saying mama more often and almost everyday, she is standing up so much with a bit of support, but her legs have gotton stronger and she stands up for about 25 minutes, her head control is amazing she can hold it by herself for a good 35 minutes, and she is just babbling all day now, without stopping, so this is the update for now, I will write back when more changes happen. Talk to you latter, take care Felicia Gallo Share your photos with the people who matter at Canada Photos

The best gets better. See why everyone is raving about the All-new .

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  • 3 months later...

I actually responded to Alana b/c I'm in a hurry and

don't know how to start a thread (I'm sorry)

Time.com is on the story:

http://www.time.com/time/nation/article/0,8599,1574851,00.html?cnn=yes

This quote made me hold on to my desk so I didn't

scream at work:

" Some disability advocates have suggested that this

course of treatment is an abuse of 's ‘rights'

and an affront to her ‘dignity.' This is a mystery to

me. Is there more dignity in having to hoist a full

grown body in harness and chains from bed to bath to

wheelchair? will always have the mind of an

infant, and now she will able to stay where she

belongs—in the arms of the family that loves her. "

That is from one of the doctors.

I think CNN will also be talking about this tonight at

7 Central Time.

Dina

--- Alana <alrt@...> wrote:

> NATIONAL COUNCIL ON INDEPENDENT LIVING (NCIL)

>

> ACTION ALERT

>

> Send in your stories to support the " Promoting

> Wellness for

> Individuals with Disabilities Act of 2007 " !

>

> Your stories are needed to support vital legislation

> to improve

> access to medical equipment! If you have ever been

> denied diagnostic

> medical testing or ran into barriers while getting a

> mammogram, an x-

> ray, or getting on an examination table in a

> physicians office

> because of your disability, NCIL needs to know about

> it!

>

> Senator Tom Harkin (D-IA) will introduce the

> " Promoting Wellness for

> Individuals with Disabilities Act of 2007 " in the

> coming weeks to

> establish accessibility standards for medical

> diagnostic equipment

> and create wellness grants to fund health programs

> that focus on

> individuals with disabilities.

>

> In addition, the legislation requires medical and

> dental schools,

> along with their residency programs, to increase

> training to improve

> competency and clinical skills in providing care to

> people with a

> variety of disabilities.

>

> NCIL has promised Senator Harkin support. Senator

> Harkin was the

> chief sponsor of the Americans with Disabilities

> Act. NCIL members

> have stories regarding medical access barriers for

> people with

> disabilities across the nation. NOW is the time to

> arm the Senator

> with YOUR real life stories when he introduces the

> bill in the 110th

> Congress!

>

> Please send in your stories regarding medical access

> to

> Leef, Health Care Policy Analyst at NCIL1710 Rhode

> Island Ave, NW,

> 5th Floor Washington, DC 20036, or e-mail them to

> @.... For more information on Access

> to Medical

> Equipment see ILRU's webcast with June Kailes on

> January 4, 2007.

>

http://www.ilru.org/html/training/webcasts/archive/index.html

>

>

> This information is being distributed as a benefit

> to NCIL members.

> Please feel free to communicate this alert to the

> people your

> organization serves.

>

>

>

>

__________________________________________________

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  • 9 months later...

Dear Alpine,

Been thinking of you and wondering how your recovery was going? Remember we are here to support, no matter how your recovery is going, especially when it's taking awhile. Your body has been through a lot with two revisions, and hopefully your pain issues will come around. Please talk out your situation with us, there is bound to be someone here who feels or has felt what you are going through and can give you some added support, and we just plain miss your voice here. Good to hear from you, aand if you need to talk again you have my numbers, know I'm pulling for you!

Colorado Springs

[ ] 's Story

Hi Girls, haven't been around for awhile. Been feeling sorry for myself, therefore not motivated to visit. But 's experience has been a kick in the a** for me. I realized yesterday that I really need to start working on my attitude about my personal situation (almost 8 months post op and still on pain meds)and through God's providence I came to peek in on what's going on around here with ya'll. I will be in prayer for . Strength to endure, courage to accept, compassion and support from family, wisdom for the doctors and most importantly success and a life restored!Love to you all.Alpine

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Hi ,

Thank you for thinking about me. I had been doing really well right

after my 6 month post op appointment. I had begun to swim a little

and my overall well being was great. I don't know what happened

except that I went off the pain meds to see how I would do. I felt

awful. The pain returned, VERY LOW ENERGY. I would do what I had

to do in a day and then I would sit and read or watch a movie for

the rest of the day. No desire to do anything else. It just hurt

too much to move around. So then I saw my local doc and asked to

try Ultram to see if that would work. Took it for about three weeks

and needed way too much for the stuff to do anything, and the pain

was never really gone.

So last week I called Dr. LaGrone told him what I had been doing and

that I had to come to some sort of understanding with myself and him

that I obviously needed the vicodin to function and have any quality

of life right now. I told him I needed a pep talk and what did he

think? He said based on what I had been through, he wasn't

surprised that I still needed pain meds and not to worry about it.

We would revisit the issue in February for my 1 year check-up.

It's tough for me to call the office every two weeks and ask for a

refill. It makes me feel sleazy, dirty and like scum. I've been

thinking through this issue and remembered when I was in the

hospital for the Harrington rod procedure and I wouldn't ask for

pain meds during that time. I had a roommate who had had some type

of back surgery and she had no problem asking for pain meds.

Anytime she would ask, I would weakly say to the nurse, me too

please and feel like crap afterwards. When I had been home for a

couple of weeks I had run out of meds. It was the middle of the

night and I was in the downstairs bedroom balling my eyes out b/c I

was in pain and didn't know what to do. My husband had seen 1/2

pill on the shelf somewhere and went searching for it that night.

He managed to find it, I took it and was finally able to go to

sleep. I think he must have called in for a refil for me b/c the

next time I saw the doc he scolded me and said that it's okay to

call in for pain meds. I remember my mother telling me one time,

Alpine it's okay to take something once in a while.

I seem to have some wierd thing wired in me about asking for the

meds. Well, I've finally made peace with the situation after

talking to Dr. LaGrone. I needed his approval for some reason. The

fact that I don't need to think about it till February brings me

some relief.

So today I called in for a refill. Tried to be real brave and

nonchalant about. All the while thinking, okay Alpine this is no

big deal. So I do it, feel pretty good about it. Well, low and

behold a few hours later I get a call from his assistant .

Alpine he says, I noticed that you've called in very early for your

meds this time and wanted to know what's going on. I wished I could

have crawled under a rock at that moment. Yep, it's me,

Alpine calling in for drugs cause I'm a druggie. Dr. LaGrone never

told about our conversation and I had to do it all over

again. Crap!

Thanks for listening to this stupid story. I miss you guys. Your

always so good about encouraging me to come to ya'll for support.

I'm a stubborn/stupid mule who has trouble asking for anything.

Here is one question I have for ya'll. Those who have had to be on

pain meds for long periods of time, did you notice that it gives you

more energy. One thing I would experience, is I would be in pain,

I'd take the meds, sit down for about an hour and wait for them to

kick in, as soon as they did I would have this incredible surge of

energy and could really get things done. When I went off of them

for that time, I had ZERO energy. Enough to get a shower, take care

of a few little somethings and that was it for the day. Now that

I'm back on them, the energy level isn't near as high as it had

been. I still feel so fatigued. Sometimes my legs and arms feel so

heavy it's a real effort to move them. I'm trying to stay on the

meds regularly so as to get energy back and try to get a few things

done around here. I got to say, right now the quality of my life

has gone down the tubes. I really have to budget my energy and I

have no social life to speak of, just don't have the energy for it.

Please tell me at 18 months I'll be my 'ol peppy self again, buzz'n

around like nobody's business.

Phew................you guys are real troupers to listen to all this.

Love you,

Alpine

>

> Dear Alpine,

>

> Been thinking of you and wondering how your recovery was going?

Remember we are here to support, no matter how your recovery is

going, especially when it's taking awhile. Your body has been

through a lot with two revisions, and hopefully your pain issues

will come around. Please talk out your situation with us, there is

bound to be someone here who feels or has felt what you are going

through and can give you some added support, and we just plain miss

your voice here. Good to hear from you, aand if you need to talk

again you have my numbers, know I'm pulling for you!

>

>

> Colorado Springs

>

>

> [ ] 's Story

>

>

> Hi Girls, haven't been around for awhile. Been feeling sorry for

> myself, therefore not motivated to visit. But 's experience

has

> been a kick in the a** for me. I realized yesterday that I

really need

> to start working on my attitude about my personal situation

(almost 8

> months post op and still on pain meds)and through God's

providence I

> came to peek in on what's going on around here with ya'll. I

will be in

> prayer for . Strength to endure, courage to accept,

compassion

> and support from family, wisdom for the doctors and most

importantly

> success and a life restored!

>

> Love to you all.

> Alpine

>

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Alpine,

Sometimes it is funny when you have the same problem as

somebody else.What I mean is, my refill was for Vicadin and

it was every two weeks too. My problem was the pharmacist that

filled the prescription looked at me with scorn every time I went

to pick it up. He made me feel like dirt. I got so mad that the

next time I went to pickup my prescription I took an xray with

me. I didn't care. I told him I wanted to show him something and

then I showed him the xray. I said the next time you want

to pass judgement on someone for their drug use, think of today.

He has been as nice as can be ever since. Face it we have been

there and back, either ignore what people think or do something

about it. I for the most part accept the ignorance of others.

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Hi all,

A quick favor...if you go off topic when you respond to a post,

could you rename it in the subject area? I know a lot of people

would like to know Alpine's progress (me included!), and wouldn't

think to look under a post called " 's Story " .

Thanks.

is back in recovery, has been since Wednesday night, and

apparently having a lot of problems with the medication they are

giving her. Since I can't call her in recovery, I am waiting to hear

from her husband when it is convenient for him to call. As soon as I

know anything more, I'll let you all know. Let's keep our fingers

crossed, this has been an incredibly rough ride, so it seems.

Cam, as soon as is moved to a room, I'll post the information

so if anyone wants to send cards, flowers, etc. they may do so.

All the best,

Edie

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Edie,

That really stinks. Please let us know what goes on as you hear the

news. Why am I feeling so scared that a hospital out on Long Island

can't wrap their heads around her pain managment needs?......although I

hope that is not the case.

I will try to send flowers or a note from here when you get her contact

info up. Thanks.

And thanks for reminding us about the subject line. It really does

matter also for people going back wishing to search these archives down

the road!

Take Care, Cam

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Cam,

Not to put the fear into you any further, but was not at a

hospital in Long Island...she is at the Hospital for Special Surgery

(Dr. Boachie's hospital) right here in Manhattan, considered one of

the best hospitals for spinal patients in the world.

The details are still sketchy, and she is still back in " recovery "

so I do hope I hear something from someone soon. If not, I'll try

calling her husband over the weekend. I was planning on visiting her

Monday, but I don't know that they'll let me in to recovery. Let's

hope the upcoming days are better, because so far, post op sounds

like it's been a nightmare...

Will keep you posted as I get info--

>

> Edie,

>

> That really stinks. Please let us know what goes on as you hear

the

> news. Why am I feeling so scared that a hospital out on Long

Island

> can't wrap their heads around her pain managment

needs?......although I

> hope that is not the case.

>

> I will try to send flowers or a note from here when you get her

contact

> info up. Thanks.

>

> And thanks for reminding us about the subject line. It really does

> matter also for people going back wishing to search these archives

down

> the road!

>

> Take Care, Cam

>

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Edie,

I must have misunderstood, I thought this DrCunningham was a more local

doctor as I thought you said she was seeing someone closer to her home.

I just assumed that the hospital was also more local. I guess if they

are having difficulties at HSS then it is an entirely more complicated

matter and maybe even worse than I imagined.

I am sending her the very best healing thoughts clear accross the

Atlantic....I hope she catches some.

Take Care, Cam

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Great story, Val. Good for you.

Sharon

[ ] Re: 's Story

Alpine,Sometimes it is funny when you have the same problem assomebody else.What I mean is, my refill was for Vicadin andit was every two weeks too. My problem was the pharmacist thatfilled the prescription looked at me with scorn every time I wentto pick it up. He made me feel like dirt. I got so mad that thenext time I went to pickup my prescription I took an xray withme. I didn't care. I told him I wanted to show him something andthen I showed him the xray. I said the next time you wantto pass judgement on someone for their drug use, think of today.He has been as nice as can be ever since. Face it we have beenthere and back, either ignore what people think or do somethingabout it. I for the most part accept the ignorance of others.

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  • 3 months later...

Absolutely Sheri! I welcome you to share my stories; I'm all for

getting the word out anyway you can.

I think a lot of the reason people don't know anyone who was harmed by

vaxing is because maybe they are not open to looking for it/don't know

to look for it. For instance, I was the one who questioned the doctor

in my best friend's case.. my friend didn't even think to question it.

Most people are so trusting/clueless of anything medical that they

don't think to question, and most (not ALL) doctors like it that way.

The less you question, the less they have to be put on the spot. I

questioned, and the answer was (much to my surprise) " Yes, this was

*probably* caused by her vaccines, but it's very rare that this would

occur. " The reason I questioned the doc is because I knew when she

went in for her shots.

With all the other cases, no doctor ever admitted the cause was

vaccination (even in my case, even though it was immediate). It was

the fact that I knew the vaxing had occurred in the last 12-24 hours

that I knew to investigate whether vax could have been the cause. It

was very apparent, after looking into specific reactions, that the

causes were from vaccinating.

On Feb 7, 2008 8:19 PM, Sheri B. <tallchick1966@...> wrote:

>

> Thank you, . I have cut out all identifying aspects of your e-mail and

> shared this with many other moms. Hope you don't mind.

>

> And this is but ONE person out there who knows of this many people who have

> been affected.

> Sheri B

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Not to mention the vaccine reactions that are not immediate like

cancer, diabetes, asthma, ear infections, autoimmune diseases,

allergies, learning disabilities. I'm even beginning to think that

childhood obesity is a vaccine side effect, I mean so many damage the

pancreas and insulin production, and really insulin is the number one

hormone in determining weight, hunger, and energy.

I'm 29 and when I was a child I had not ever heard of autism or ADHD

or children having diabetes. In all my grade school years, I only

recall one child having food allergies and two having asthma. Side

effects like death or brain damage may be rare (although not as rare

as most think,) but these other illnesses are NOT rare at all, today

anyways.

> >

> > Thank you, . I have cut out all identifying aspects of your

e-mail and

> > shared this with many other moms. Hope you don't mind.

> >

> > And this is but ONE person out there who knows of this many

people who have

> > been affected.

> > Sheri B

>

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csn you direct me to the original email??

I would love to read

Thanks

> >

> > Thank you, . I have cut out all identifying aspects of your

e-mail and

> > shared this with many other moms. Hope you don't mind.

> >

> > And this is but ONE person out there who knows of this many

people who have

> > been affected.

> > Sheri B

>

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  • 2 months later...
Guest guest

Hi ,

I loved your account - thankyou for transcribing your experience.

Really impressed with your poise - I wish I could gather my thoughts

so well in the face of indifference.

I'd also appreciate a copy of your " TS " please!!

My email is below:

Regards,

Candida : footloosewoolhouse@...

>

> ,

> I would be interested in seeing your spreadsheet also please. Could

you

> email it to me at Yorkieluv@...

>

> Thanks,

> Angel

>

>

> _______________________________________

> No viruses found in this outgoing message

> Scanned by iolo AntiVirus 1.5.3.5

> http://www.iolo.com

>

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Guest guest

,

Good for you! I am impressed and encouraged. Who knows, your well thought out

points and rebuttals may have planted a seed of doubt in the mind of the ped.

Wishful thinking, but ya never know. Can you send me a copy of your spreadsheet

too? If its ok, I'd love to print it up and add to it just for my own reference.

Best wishes,

Susie

szahratka@...

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,

I would also like to see the spreadsheet, please. Could you

email it to me at moejonesy@...

Blessings, Moe

Proud Mommy of 5,

Moe

__________________________________________________

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Hello,

Could I also ask for a copy, my email is ejandls@...

Thanks so very much, I am trying my luck with another doctor next week and

want to sound well informed just incase.

Thanks so much,

Moe <moejonesy@...> wrote:

,

I would also like to see the spreadsheet, please. Could you

email it to me at moejonesy@...

Blessings, Moe

Proud Mommy of 5,

Moe

__________________________________________________

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