Re: New Member

[Guest guest]

Danny

I see you take neurontin for pain ,I am diabetic and just recently

started taking it for pain I have in my feet and legs.do you have any

side affects from this drug such as drowsiness or being tired am trying

to find out as much as I can on this drug .thanks for any help you can

give me.

Joann

Danny wrote:

> Hi My name is Danny and I'm a new member as of 04/07/04. I suffer

from Severe Peripheral Nerve Damage and Severe Vascular Problems I've

had Chronic Pain for 3 years now. I take Percussetts,Neurotins and

use the Duragesic75 patch.I'm looking forward to reading some of your

posts and hope to learn from each and everyone one of you a little

here and a little there! Thank Yo for allowing me the oppurtunity to

join! Danny NH

[Guest guest]

hi clark, my name is barbara. i started getting maigraines many years ago. my

mom and sister and son and daughter and grandson get them. i have found for me a

pill called zomig helps. its a rx. talk to your doctor. i understand how bad

they hurt

clarkpaton wrote:Hi--my name is , and I've

suffered from almost daily migraines

for about 5 years.

[Guest guest]

Thanks, Barbara, but I've tried Zomig, and it doesn't work nearly as

well as Imitrex for me once I get a headache. I try the topamax to

prevent headaches, but I haven't seen any results yet.

[Guest guest]

Thanks, Barbara, but I've tried Zomig, and it doesn't work nearly as

well as Imitrex for me once I get a headache. I try the topamax to

prevent headaches, but I haven't seen any results yet.

[Guest guest]

sorry it didn't work for you. have you tried accupuncture? i have gone and it

has helped. barbara

clarkpaton wrote:Thanks, Barbara, but I've tried Zomig,

and it doesn't work nearly as

well as Imitrex for me once I get a headache. I try the topamax to

prevent headaches, but I haven't seen any results yet.

[Guest guest]

Hi

Welcome to the group. I hope we can be helpful to you. Has your doctor

evaluated the condition of your cervical spine? One of our members has

migraines and it turned out that her cervical spine was damaged.

Also have you been tested for allergies?

This group has been a life saver for me. Once again welcome.

Kaylene

Hi--my name is , and I've suffered from almost daily migraines

>for about 5 years.

>

>

>

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[Guest guest]

Hi Sherrie

Welcome to the group. I hope we can be helpful to you.

Kaylene

Butte Montana USA

>

>Looking forward to chatting with you.

>Sherrie

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[Guest guest]

Hi Sherrie,

I am sorry for the pain that brought you here, but glad to " meet "

you. I'm Lee,31, married mom of 2, in Montana. We have 1 cat and 1

dog. I have DDD, stenosis, and unstable grade1-2 spondy. I am

scheduled for surgery in October. I look forward to getting to chat

with you more.

Blessings,

Lee

[Guest guest]

Hi Sherrie,

Welcome to the group and you can whine as much and as often as you want here.

That's what we are all here for. Just to be able to interact with people who can

actually understand how we are feeling.

I know how painful those disks can be, in fact just aggravated one in the car a

bit ago and am in terrible flair right now.

I think you'll find it's quite natural for you to not be too happy. Right now

you have very little to be happy about. Your entire life has been turned upside

down and you don't understand why.

I hope you'll find some friends here and feel like you can open up and share

more about yourself soon.

Again welcome.

Your friend,

Jeff-NY/PA

jeffreyscharff@...

AKA

zinsdad@...

" Knowledge speaks,

but wisdom listens. " Jimi Hendrix

[Guest guest]

Hi I'm new too. I'll just mention one thought. Duragesic 50 patches (Fentyl)

stays on for 3 ddays and gave me continual relief. Might be worth a try. I

also get weird reactions to some pain meds.

More wisdom later.

Joan

Rp wrote:

This is my first day here. My name is and I live in central

California.

[Guest guest]

Sorry to hear about your multiple angioplasties. Are you having it done at

different sites or are you haivng problems with restenosis? If so, have the dox

tried a coated stent for you yet?

I also hear you about pains in your feet. At exactly the same time as I

herniated my T7/T8 disc (last Thanksgiving weekend), my feet started hurting and

swelling. Its incredibly painful and so far, no doctor has been able to give me

any reason as to why my feet hurt (the balls of my feet & toes) as well as the

anatomical equivalent in my hands - or why my legs keep bloating up like

balloons. I gained over ten pounds in water weight in a few days. They've

tested me for everything out the wazzoo - the obvious things like diabetes,

heart problems, gout - which all come back fine. Then they keep testing me for

lupus - really after adding yet another disease label to my eclectic collection

- but I keep testing negative for that as well. I have more testing next week

for my feet. Still quite painful although swelling has gone down except around

my toes. I'm sure that will be back though.

As for some answers to why you are so resistant to pain meds and why you feel

pain so acutely - perhaps you have something going on with you like I have. I

have antibodies to seratonins, enkaphalins and endorphins. Therefore, most of

the feel good natural opiates my body makes, my immune system destroys. I too

do not respond well to pain meds. The opioid pain meds make me itch all over

and if I take enough of them they make me sleep to a point for perhaps an hour.

Then I get super wired, the pain hasn't changed and now I'm itching all over and

it feels like my skin is being burrowed into by insects. NOT a pleasant

experience. So in general, I avoid these pain meds. I find I get better relief

(or at least I can go to sleep) using muscle relaxants. For OTC NSAIDS, like

you, I need to take so many of them its ridiculous. Not good for your kidney or

liver not to mention your stomach.

Funny the fentanyl didn't work for me at all - I've had it twice. The first

time, they maxed me out on the dose and then insisted that they couldn't give me

anymore. I was screaming in pain (the surgeon hit every tooth nerve root from a

turbonectomy to my sinuses). It was like having a root canal done on every

tooth in my upper jaw. That medication didn't do anything for the pain - but

then that was pretty severe pain since he really aggrevated all my nerves in my

sinuses.

I'm a new member too - just thrilled to have others that share similar problems

as well.

Rp wrote:

This is my first day here. My name is and I live in central

California. I am 60 years old and have both diabetes and some rather

serious heart problems with multiple angioplasties etc and also

Atrial Fibrillation.

[Guest guest]

Kumar wrote:

Sorry to hear about your multiple angioplasties. Are you having it done at

different sites or are you haivng problems with restenosis? If so, have the dox

tried a coated stent for you yet?

**********

One of them was a redo at the same site but the others were in differnet areas.

So far they have not used the coated stent on me.

I also hear you about pains in your feet. At exactly the same time as I

herniated my T7/T8 disc (last Thanksgiving weekend), my feet started hurting and

swelling. Its incredibly painful and so far, no doctor has been able to give me

any reason as to why my feet hurt (the balls of my feet & toes) as well as the

anatomical equivalent in my hands - or why my legs keep bloating up like

balloons. I gained over ten pounds in water weight in a few days.

Yes sadly foot pain in advanced diabetes is fairly normal. Like you my feet look

ballons and feel exactly like they are just going to burst wide open any second.

That is a sign of congestive heart failure in which your body starts holding

water badly and it shows up worst in your feet and lower legs.

Thanks for all the feed back. A person can feel like they are the only wierdo in

the world that is having these problems to the point it can make you start

questioning your own mental conditions. It is excellent to hear from others

that are having the same things going on and know that I am not the only one in

the world these things are happening to.

[Guest guest]

Joan C Bobbitt wrote:Hi I'm new too. I'll just mention

one thought. Duragesic 50 patches (Fentyl) stays on for 3 ddays and gave me

continual relief. Might be worth a try. I also get weird reactions to some

pain meds.

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

Thanks, I have been reading about those and that is one of the things I have on

my list to ask him/her about when I finally get the appointment. Thanks

[Guest guest]

In my case, there is nothing wrong with my heart - I'm not suffering congestive

heart failure. I guess the next thing is to figure out what is going on with my

veins/arteries.

Sorry that you're having such problems with your cardiovascular system coupled

with diabetes. No you're not the only weirdo out there having these problems -

many people have them. Some just need to talk about it a lot more.

One saving grace for me is that my brother, while his case and problems are not

as severe as mine, has similar back issues. The two of us get together and talk

about back problems for hours. Everyone else is like - You're still talking

about your backs? We just smile.

Rp wrote:

Thanks for all the feed back. A person can feel like they are the only wierdo in

the world that is having these problems to the point it can make you start

questioning your own mental conditions.

[Guest guest]

Welcome aboard...

Please, tell us more about yourself and your precious baby!!!

My name is Angel, I'm the mom of 6 kids, my son is 11 now and has MDS.

We live in southern California.

Do you have any specific questions about MDS? We'd love to help ya out

anyway we can!

~ANGEL~

Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease

Lance 16, Tyler 12, 9

Jaeda 8 & Shayne 2

[Guest guest]

Welcome to our family! Please tell us more about you and your baby! Where do you

live?

Any questions you have concerning MDS, feel free to ask here. If we don't have

the answer we will do our best to find it!

Kristy Colvin

IMDSA President

MOM to Arron 22, 19, Tim 18 MDS, Stevan 17, and Garrett 8

wrote:

We've got a new member on the e-group!

They wrote:

My child was born on 1/5/04 and was diagnosed with Mosaic Down

Syndrome.

I want to know more about it.

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

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

Become a member of IMDSA at http://www.imdsa.com

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

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

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

[Guest guest]

Welcome - You came to the right place for help. Since our little Adam was

born, I cannot tell you how much help, advice and e-hugs I have gotten. It

is a wonderful group. Tell us more about your daughter and don't be afraid

to ask all of the questions you want.

Donna - gram to Adam 2 mds

-- New Member

We've got a new member on the e-group!

They wrote:

My child was born on 1/5/04 and was diagnosed with Mosaic Down

Syndrome.

I want to know more about it.

[Guest guest]

Welcome, Terri and Abby!!

It's been my experience, and I get the same sense from listening to parents

here on the board, that DS and MDS, while are just varying degrees of the same

syndrome, there are as many differences as there are similarities! But of

course every child is different and progresses at a different pace... DS, MDS

or no syndrome at all!!

Glad you found us!!!

~ANGEL~

Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease

Lance 16, Tyler 12, 9

Jaeda 8 & Shayne 2

[Guest guest]

Welcome to the group!! My oldest has MDS and is 10. I also have 4 younger

children, with the youngest being 7 mo old. Did Abby give you a tax deduction,

or wait until January to be born?? We were lucky enough toget our deduction!!

Look forward to hearing from you.

Irene mom to Nat 10 MDS, Luke 8, Emilia 5, Lilly 3, and Isaac 7mo

abigailmds wrote:

Hi am good thanks. My name is Terri and we only have one child,

Abigail Grace. We call her Abby. She was diagnosed with MDS soon

after she was born but we just got the report back. Seems the

Doctors dont think there is any difference in DS so we weren't told

about her having MDS. There feeling is DS is DS. She is 7 months

old and doing great. Right now we have no questions but i am sure

we will soon. Still a little overwhelmed!

> Welcome aboard...

> Please, tell us more about yourself and your precious baby!!!

>

> My name is Angel, I'm the mom of 6 kids, my son is 11 now

and has MDS.

> We live in southern California.

>

> Do you have any specific questions about MDS? We'd love to help

ya out

> anyway we can!

>

>

> ~ANGEL~

>

>

> Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease

> Lance 16, Tyler 12, 9

> Jaeda 8 & Shayne 2

>

>

>

[Guest guest]

Terri,

Our daughter is 2 1/2 months old and we have been discussing having

additional genetic testing/counseling done. I know that this probably

wouldn't happen to our next child, but I still think we will have

testing done. Our geneticist said that we didn't need it. Maybe when

it comes time to ttc again we will feel differently. I love Abby's

name. Abigail Grace-beautiful.

Lynnelle Mom to Emma

> Hi thanks, I am Terri and my daughter is Abigail Grace, we call her

> Abby.  She is 7 months old and is so great!  We live in Plano, Texas

> in the Dallas area.  Right now we don't have any questions i guess

> we are just wondering about having other children.  Did you get any

> genetic counceling after having your Son?  We are struggeling with

> what to do.  I am 37 and know that the odds just go up the older i

> get.  Any advice?

>

>

>

>

> > My child was born on 1/5/04 and was diagnosed with Mosaic Down

> > Syndrome.

> > I want to know more about it.

> >

> >

> >

> > Won't you please consider adding your personal story on the MDS

> website today?  http://www.mosaicdownsyndrome.com

> > *************************************************

> > Become a member of IMDSA at http://www.imdsa.com

> > *************************************************

> > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

> > *************************************************

> >

[Guest guest]

Welcome...glad you found us!!! I'm Angel.. mom to , with MDS and

Hirschsprung's Disease...who is 11 now!

Look forward to learning more about you and your son!!

Angel

[Guest guest]

Welcome! This is a great place! I am Mom to Emma, 5 months old.

Lynnelle

> Welcome...glad you found us!!!   I'm Angel.. mom to , with  MDS

> and

> Hirschsprung's Disease...who is 11 now!

>

> Look forward to learning more about you and your son!!

>

> Angel

>

>

>

[Guest guest]

Welcome! I have a 13 year old girl with MDS. I am sure you will be able to get

valuable information from the group.

Where are you from? We live in China Spring, Texas.

Charlotte - Mom to Mark (14) and Katy (13 - MDS)

New Member

Please help me welcome our new member!

I am a parent of a 13 year old boy with MosaicDS.I would like to

meet other parents/caregivers of children/adults with MosaicDS,

share experiences and keep up with all new research on MosaicDS.

Become a member of IMDSA today at http://www.imdsa.com<http://www.imdsa.com/>

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

Learn more about MDS

http://www.mosaicdownsyndrome.com<http://www.mosaicdownsyndrome.com/>

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

Hi,

We live in Holmdel, New Jersey. My son is MDS, he has no visible

signs of DS, he is even too tall for his age (already 5'73/4''), no

visible signs of any disability, but he is disabled. His speech is

delayed and he has some developmental delays and we are getting some

typical teen behavior. His teacher used to say that he is all of these

people in one.

It is good to see others in same position!

Ranka

Re: New Member

Welcome! I have a 13 year old girl with MDS. I am sure you will be

able to get valuable information from the group.

Where are you from? We live in China Spring, Texas.

Charlotte - Mom to Mark (14) and Katy (13 - MDS)

New Member

Please help me welcome our new member!

I am a parent of a 13 year old boy with MosaicDS.I would like to

meet other parents/caregivers of children/adults with MosaicDS,

share experiences and keep up with all new research on MosaicDS.

Become a member of IMDSA today at

http://www.imdsa.com<http://www.imdsa.com/>

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

Learn more about MDS

http://www.mosaicdownsyndrome.com<http://www.mosaicdownsyndrome.com/>

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

Hi my wonderful friend!

I´m so glad that you are here! We have been fooling around alot

lately in this group, however, don´t let that stop you from doing

your work or asking questions about it or asking for help. There are

so many wonderful people here that will be happy to assist you. And

if you don´t think they are wonderful, guess what to do...the Work!

I´m so happy that you are here now!

Love you very much,

your Angel-friend

> hello everyone!...a good

> friend told me about this

> group and i wanted to join

> right away!....she also

> introduced me to the work

> and im very excited to

> begin..im so tired of being

> a prison of my own thoughts

> and want to be happy....i

> have tried all kinds of

> groups and programs and

> nothing has helped me but i

> feel really positive about

> this one :-)....i hope to

> get to know all of you and

> learn about this group!

>

> thankyou

> christina