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Welcome Clare, hope you'll enjoy this list, lots of variety of topic

on here! You might like to check out Guildford or Godalming

branches - there's actually a get to know you evening for Godalming

branch on Nov quite soon (9th?) if interested will try to find the bit

of paper! If you would like a localish newsletter, let me know...

Caro Heyworth

Newsletter editor for Cranleigh & Villages branch, SAHM to Livi (13)

and Toby (4), menagerie of animals

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Clare wrote:

> I'm not yet a member of NCT but I'm hoping to join as soon as my

> Husband and I start trying in December. >>>>...

hello Clare

Welcome to the list - I am sure you will get a lot from it although

some of it maybe enough to put you off having children for

life!!!!!!!!!

Don't know who is in Hereford but they will shout at some point no

doubt. I am miles away in rainy Yorkshire.

Trisha

SAHM to 3 boys

Jack 8, 6, Isaac 2

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> Hi,

>

> I'm not yet a member of NCT but I'm hoping to join as soon as my

> Husband and I start trying in December. I'm 21, in my final year of

> nursing degree in Guildford, but we're moving up to Hereford where my

> parents live in May after my course finishes. I'd love to hear

> from other young mums, and especially anyone in the Hereford region.

Hi Clare - welcome to the list - I'm afraid I'm neither a young mum nor in

Hereford - but I did do my degree in Guildford! I hope you enjoy the list.

Leighton-Young

Henley & District Branch

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on 20/10/01 02:35 PM, Clare Kirkpatrick at cloggsy@... wrote:

> I'd love to hear

> from other young mums, and especially anyone in the Hereford region.

Hi Clare

Welcome to the list :)

Do I qualify? I'm young in spirit and I live 'nearish' to Hereford (I'm in

Cardiff) ;)

Jenni

( & Gethyn)

17yrs; Mari 3yrs Home Birth; Nia 5 wks Home Water Birth

My photo album & guest book:

http://www.picturetrail.com/jennihughes P/W = gwenni

" If you don't know your options - you don't have any "

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>Hi,

>

>I'm not yet a member of NCT but I'm hoping to join as soon as my

>Husband and I start trying in December.

You don't need to wait - I joined several years before trying to conceive! :-)

Mind you, it's possible you'll change your mind about babies after

reading some of our stuff - at least you will be one of the few who

doesn't say " Why does nobody every tell you...? " :-))))))

Enjoy the list (and the trying when you get to it)

> I'm 21, in my final year of

>nursing degree in Guildford,

:-) I nearly did mine there (enjoyed my visit) but went to Manchester

(because I wanted to be a health visitor - that and falling in love

with one of the worst areas in the city which has now been

demolished).

--

jennifer@...

Vaudin

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Hi Clare

Welcome to this list (aka mad house) which you should find very

informative and supportive - I think an excellent idea to get gen'd up

even before conception - and even joining NCT (as suggested)

wouldn't be bad idea at this stage...

Have you got hold of the newsletter from the Guildford branch yet?

If you wanted we could arrange a real nct-coffee in Guildford - lots

of nice places to meet up - as there are quite a lot of us in this

area and around from this list.

If interested, let me know after the weekend...

Caro

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Hi clare and welcome ;o)

Lonnie Phoebe & Eloisa's mama

& expecting a Christmas delivery...

My therapist told me the way to achieve true inner peace is to finish what you

start.

So far today, I have finished 2 bags of chips and a Chocolate cake.

I feel better already.

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  • 4 months later...

Sharyn, welcome to the group. You have found a wonderful group of people.

Please just jump right in and tell us a little about yourself. And ask all

the questions you want. We all learn by questions. I live in Calif and have

been diagnosed with Rp for over 3 years. I am currently on pred and

Plaquenil. You will see that we are all different and all take different

meds and the RP shows it's face in different ways.

Looking forward to getting to know you.

hugs

claudia

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Hi Sharyn,

Welcome to the RP. group.

If you have questions you have come to the right place.

Someone here will be able to help you, this is a great group of caring

people and there is lots of info here.

Looking forward to your posts.

Sandy

> I want everyone to please welcome our newest member. Her name is Sharyn

and

> she has lots of questions, so I hope everyone will help her out.

> Welcome Sharyn, to our wonderful group. You have found a wealth of

knowledge

> here.

> W

>

>

>

>

> 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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  • 1 year later...
Guest guest

Welcome Jill. I am constantly amazed at how many MO were sexually abused as

children. The docs claim it causes obesity. But I think low self esteem

because of obesity allows us to be preyed upon.

Fay Bayuk

**300/168

10/23/01

Dr.

Open RNY 150 cm

Click for My Profile

<A

HREF= " http://obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008 " >http:\

//obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008</A>

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Guest guest

In a message dated 7/8/2003 5:15:06 PM Eastern Standard Time, raggedy@...

writes:

> There are so many factors involved. I know for me though food became a

> comfort, a solace. And that was it more than anything I believe. ... abusing

> food.

>

You see I believe it is in our genes to be obese. It is much more

complicated than merely behavioral.

I respect your opinion, but after many years of wonderful therapy and dealing

with my issues, I was still MO. Many researchers and docs believe this and

the scientists have even identify the gene and the hormones.

Fay Bayuk

**300/168

10/23/01

Dr.

Open RNY 150 cm

Click for My Profile

<A

HREF= " http://obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008 " >http:\

//obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008</A>

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Guest guest

Interesting theory Fay... but also I have seen many MO women who were NOT obese

as young children and were abused. I think some of us used food to hide our

feelings that we didn't know how to deal with... particularly when abused by a

family member. Also the fat provides insulation and protection from the harmful

things in the world. It makes us feel bigger. As a fat teenager I think I

subconsciously believed that I was hiding my sexuality and that my perpetrator

would not come near me again because I wasn't attractive. There are so many

factors involved. I know for me though food became a comfort, a solace. And

that was it more than anything I believe. ... abusing food.

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.495 / Virus Database: 294 - Release Date: 6/30/2003

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Guest guest

Anne, Welcome to the group. If it is inspiration you need you will find

some here. Congratulations on the weight loss. I completely understand

that you want to loose more weight. I am afraid my progress of late has

been very slow (4 lbs in 3 months.)

Lori Owen - Denton, Texas

SRVG 7/16/01

Dr. Ritter/Dr. Bryce

479/335/???

On Fri, 11 Jul 2003 16:02:33 -0000 " Anne " writes:

> I'm new to this board, having had an open rny in 10/01. I started at

>

> 258 (highest wt was 272). I quickly lost about 80 lbs, and have

> been

> stuck ever since. Looking for inspiration!

>

>

>

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

>

> Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

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  • 4 weeks later...
Guest guest

Hi ,

I know how you feel I have been stuck since about 9 months too. I know I

need to drink more water. I did great in the beginning but now water is a

trial for me. I'm having my abdominoplasty in 2 weeks and hope that will

boost my loss again. I figure while I'm recovering I can get the water going

again and maybe do mostly protein shakes again since I will be really

restricted on what I can do for a few weeks.

have you tried changing your routine. Sometimes our bodies get settled into

what we are doing and need a change. maybe change your exercise habits. I

plan on going back to body building after I recover from the plastic surgery

and see if that might help. the more muscle the more calories we burn. I was

body building in the beginning but when my back got so bad they told me to

stop. The PS is supposed to relieve my back pain so I should be able to

return.

Just a thought!

Sharon Ann Merritt

Design With Merritt

http://www.DesignWithMerritt.com

http://www.eclecticacademy.com

>

>

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  • 5 months later...

Hi

I was near to tears reading your post. Please don't despair, there are a lot

of people in this group who share your pain and frustrations. I have only had

the 1 attack 11 months ago and I was advised that alcohol was the cause and I

know the pain that I went through was awful. My friends and family have

similar thoughts to yours and don't really appreciate what it is like. I get

frustrated at times and ask why me? But I take strength from this group who have

so

many more people was off than myself but whose caring and help must get so many

of us through the day.

Keep your head up, there will be a cure for this one day. I just know there

will.

take care

Hugh

Scotland

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  • 1 month later...

Hi Tammy. My name is Rhonda and I'm from Pennsylvania. This is a

wonderful group. We are truly here for each other. Please don't

hesitate to talk to us. Even if it's just to vent. We've all done and

have felt much better afterwards. Take care! I wish you luck.

Hopefully they can get yours under control again soon.

Rhonda

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  • 1 year later...

> I am in West Norfolk in England.

>

> Nina.xx

Hi Nina

I cant find any reference to West Norfolk can you be more specific.

It helps when people can pinpoint nearest hospitals etc.

Which hospital are you attending now for the colonoscopy?

Chris

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Nina, Wonderful News!!!!! So happy for you!!!! Love, Ingrid

> >

> > Dear Nina,

> >

> > First of all I hope your colonscopy went well. Second

> > I need to apologize and I owe you an explanation.

> > Recentely I have been receiving nasty emails from a

> > person or few persons, I really don't know because

> > their addresses is always different. At first this -

> > these people used to write nice emails asking me for

> > advices on how to cope with their disease, then they

> > have started to write me nasty emails. One of this

> > persons was called Nina, so I quickly jumped to

> > conclusions. Wrong, I shoulnd have done that. I am so

> > sorry I might have hurt you. This is something I don't

> > like doing it. I was happy however that you have

> > received so many good and supportive answers. I hope

> > your problem is something minor and that you can solve

> > it easily. Please forgive me, and write back when ever

> > you need to. ( really hope you don't need it) The

> > board is full of nice people who don't just jump to

> > wrong conclusions like I did.

> >

> > Love and prayers for you,

> > Lydia

>

>

> Dear Lydia.

>

> Please don't give it a second thought. Having the internet for

> information and support groups is wonderful, but I know only too

well

> that out there there are some very sick people, such as you have

> described above, that seek to distress and even terrorise certain

> people for their own twisted entertainment. I am so sorry that you

> have been one of the unlucky chosen ones for them to inflict their

> poison onto.

>

> In my short time perusing the posts it has become obvious that here

> on this board you have many good, decent and well-balanced people

> from whom to gain support and understanding whenever you need it.

> I hope you will allow them to keep you strong when others let you

> down.

>

> I was reluctant to post at first, not knowing whether or not I

> actually had a disease to be concerned about. I need not have

> worried, as certain people not only made me welcome, but reassured

me

> and offered me hope even if the worst came to the worst and I was

> diagnosed with a malignancy. To everyone who responded, I thank

you

> from the bottom of my heart. You have been a gift. Please do not

> hesitate to contact me at any time, for anything.

>

> So now onto my colonoscopy today. It turned out to be completely

> clear. I have a nasty case of spastic colon and irritable bowel

> syndrome, but nothing like the kind of horrors that most of you

have

> to contend with.

>

> As I said above, if there is anyway in which I can be of help to

> anyone, please do not hesitate to email me.

>

> Best of luck and love to all of you.

>

> Nina.xx

>

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  • 2 years later...
Guest guest

Hi all -

I'm a new member of the group, getting ready to start chelating using

DMSA then DMSA/ALA. I'm nervous, having had a very frightening

reaction to a DMPS challenge my doctor did on me 6 years ago. This

was a doctor who specialized in chelating metals, but it hit me so

hard that I have been sick ever since. Became chemically sensitive as

well. I haven't tried any other things to chelate since then, as I

barely tolerate most foods and supplements any more. But my body is

so run down - I just think my only hope is to try to chelate the

metals once and for all.

PS - Had my amalgams removed using proper protocols six years ago.

Mercury tested off the chart on the challenge, and subsequent hair

analyses show low mercury, but severly deranged mineral metabolism

and other indicators of mercury toxicity. And arsenic. Plus the

symptoms are all there.

I've got 25mg DMSA caps. Thought I'd start with 12.5mg every 4 hours

at first; see how that goes. I'm on a good nutritional

supplementation protocol and diet. But very run-down, with little

room to be knocked down further.

Any thoughts from any of you on things I absolutely must do or must

not do - would be much appreciated. I'm still not clear about how

many days I should take the DMSA and then how many days off. Cutler's

book is, alas, not an easy read for someone with a metal head!

Thanks in advance. My hat is off to all of you. This is not an easy

path to walk.

Janice

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  • 6 months later...

Ellen,

Welcome to the group, we all have the Sarc Monster in form or

another. I have only been here a short time myself , I have found the

to be compassionate, caring and supportive. I wish you a merry and

pain-free Christmas. And may you and your family be blessed this season.

Greg

>

> hi my name is Ellen, I have sarcoid of the liver and I do know really

> if I belong among you but I feel afraid,confused, and all alone at this

> point. I had it for 4 yrs and its gettings worse, I need others like me

> to help me try to understand and compare notes. please forgive me if i

> dont belong in this group, I dont know what to .

>

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Hello Jackie, please dont be sorry god had placed all of you in my life just when I needed it most. (right now) I take a bunch of meds, stay in pain, with fatique to exercise, I do work part-time. liver enzymes are high. Im on methotrexate and remicade, for 2 years now with now improvement (thats why i'm confused and depressed) I'm positive my new found family will help me sort things out. Merry Christmas to you and your family.

To: Neurosarcoidosis Sent: Tuesday, December 23, 2008 8:37:24 PMSubject: Re: new member

Hi Ellen Welcome to a wonderful site with wonderful people. I have NS and this group has helped a lot.

My brother-in-law has Liver sarcoid. He has had it for 12 years or more. He watches closely what he eats and drinks. He keeps active as possible and takes a bunch of meds like most of us do. I think his attitude helps him get through this monster thing.

You ask away because the moderators are great. (I get points for saying that. *wink*) You can cry, vent or laugh and we will do it with you.

I am so sorry you had to meet all of us this way but believe me you will loved at this place.

Again welcome and God Bless You.

Merry Christmas to you and yours.

Jackie

new member

hi my name is Ellen, I have sarcoid of the liver and I do know really if I belong among you but I feel afraid,confused, and all alone at this point. I had it for 4 yrs and its gettings worse, I need others like me to help me try to understand and compare notes. please forgive me if i dont belong in this group, I dont know what to .

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Hello Tracie, thanks for being my friend. Very helpful information you have given me my liver enzymes are out of control and i stay dehydrated. My liver biopsy showed sarcoid no lung involvement, chronic arthritis pain. I take methotrexate(i have no hair) and remicade for the last 2 yrs every 4 wks, . My flare ups are becoming more frequent and agressive. I'm excited about my new family and friends I feel better already. Merry Christmas Tracie and your family.

To: Neurosarcoidosis Sent: Tuesday, December 23, 2008 7:54:48 PMSubject: Re: new member

Hi Ellen,

You've found a family of fellow sarcoidians- - and many of us have systemic (multi-system) sarcoidosis- - so you are more than welcome here.

Liver sarc is a fairly common issue-- and many of the immunosuppressants can help to get it under control.

One of the BEST ways to help your liver detox is with Milk Thistle capsules. It is a natural liver cleanser-- and even with all the drugs we're on-- can really help get the Liver Function back within normal ranges. I swear by LivaTonic-- it has the MT, the psyllium, and one other ingredient. It was developed by a M.D. I learned of it from my chiropractor- - and my liver enzymes that had gone through the roof are now in the normal range--as long as I really watch and make sure I don't get dehydrated.

Hydration is another key issue-- as we have to keep our liver and kidneys functioning as well as possible. No caffeine, no alcholol, or sodas. Switch to decaf teas, (you can even get Milk Thistle tea) add a bag to your favorite herbal tea-- it is virtually tasteless- so you can still enjoy a good Cinnamon or Lemon tea.

Have you had a liver biopsy that showed sarc? Do you have any lung issues, or arthritis stuff also?

Let us know-- and we'll do all we can to help you learn about this disease, and how we manage to keep going inspite of it.

Again, welcome to the family-- we sure wish no one needed us-- but we're here-- and on this journey together.

Sincerely,

Tracie

NS Co-owner/moderator

From: iloveanita26 <iloveanita26@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Tuesday, December 23, 2008 1:40:32 PMSubject: new member

hi my name is Ellen, I have sarcoid of the liver and I do know really if I belong among you but I feel afraid,confused, and all alone at this point. I had it for 4 yrs and its gettings worse, I need others like me to help me try to understand and compare notes. please forgive me if i dont belong in this group, I dont know what to .

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