New Member

[Guest guest]

Welcome

My son is 22 and had his last surgery in June and has been totally deaf since

then. He doesn't have any of the other problems that you asked about but is

still adjusting to the deafness. He doesn't have much of a social life which

sometimes is upsetting to him. I guess part of the adjusting period. Do you

have trouble being with groups of people or getting involved in things? It

sounds like you have been through a lot already Best Wishes Sue from Ohio.

Jennette Braaten wrote:

> Name:

> Location: Western Australia

> email: rimme@...

> Relationship: Patient

>

> Why I'd like to join:

> I\'m 27 and have been deaf for just over a year from acoustic neuromas. I

> had quite a few operations and am getting a bit fed up of it lol lol. I also

> have Lupus (SLE) and would be interested if anyone else has that as well as

> NF2. Also I would like to know if anyone else has had a stroke as my doctors

> feel that NF2 might have caused mine.

>

>

>

>

[Guest guest]

, last year I went in for spinal cord surgery, NF2 related and a

shunt was put in to drain the cyst that was causing fluid to build up and

strangle off the spinal cord. I ended up having three strokes and was put on

life support for 8 days. There was little hope that I would recover, but

here I am, so yes, I do think that NF2 does have some relationship to

strokes. My daughter also has NF2 and her last MRI showed that she also had

had a small stroke at some point, however she does not know when that might

have been. She has ANs on each ear, as I do also. Hers are very small and

do not need any attention at this point. Her hearing test she passed with

flying colors. Probably more info than you were looking for.......in

Illinois

[Guest guest]

Hi and welcome from Brisbane , good to see another Aussie on the crew, My son Shane is 21, had first AN done March this year and has a little hearing on other side still, nothing else at this stage, but i think he might have had a stroke after his surgery, but nobody would ever tell me. Good luck you have joined a great group if you want to know anything. and Shane in hot and sunny Brisbane Name: Location: Western Australiaemail: rimme@...Relationship: PatientWhy I'd like to join:I\'m 27 and have been deaf for just over a year from acoustic neuromas. Ihad quite a few operations and am getting a bit fed up of it lol lol. I alsohave Lupus (SLE) and would be interested if anyone else has that as well asNF2. Also I would like to know if anyone else has had a stroke as my doctorsfeel that NF2 might have caused mine.

[Guest guest]

Hi Jennette

Yep social life is hard I am pretty right with one or two people but only if

they know bits of sign language then I can sort of lip read and read the

signs but they have to slow down on their talking and pronounce words

properly, but if there is a group of people I am lost and then just feel

left out. I think also your social life is affected because people don't

want to be with deaf people they think they are deaf as well as stupid or

they are embarrassed because they have to speck a bit more slowly and

sometimes repeat things or they are just down right afraid of " catching " the

deafness bug lol lol It takes alot of getting used to and just when you

think your on top of it something happens to remind you that you might not

be as normal as other people,so I can certainly feel for your son and the

adjustments he is going thru.

Take Care Australia

Re: New Member

> Welcome

> My son is 22 and had his last surgery in June and has been totally deaf

since

> then. He doesn't have any of the other problems that you asked about but

is

> still adjusting to the deafness. He doesn't have much of a social life

which

> sometimes is upsetting to him. I guess part of the adjusting period. Do

you

> have trouble being with groups of people or getting involved in things?

It

> sounds like you have been through a lot already Best Wishes Sue from

Ohio.

>

> Jennette Braaten wrote:

>

> > Name:

> > Location: Western Australia

> > email: rimme@...

> > Relationship: Patient

> >

> > Why I'd like to join:

> > I\'m 27 and have been deaf for just over a year from acoustic neuromas.

I

> > had quite a few operations and am getting a bit fed up of it lol lol. I

also

> > have Lupus (SLE) and would be interested if anyone else has that as well

as

> > NF2. Also I would like to know if anyone else has had a stroke as my

doctors

> > feel that NF2 might have caused mine.

> >

> >

> >

> >

[Guest guest]

I agree 100%. Seems like you no longer " fit in " . Marie

Re: New Member

>Hi Jennette

>Yep social life is hard I am pretty right with one or two people but only

if

>they know bits of sign language then I can sort of lip read and read the

>signs but they have to slow down on their talking and pronounce words

>properly, but if there is a group of people I am lost and then just feel

>left out. I think also your social life is affected because people don't

>want to be with deaf people they think they are deaf as well as stupid or

>they are embarrassed because they have to speck a bit more slowly and

>sometimes repeat things or they are just down right afraid of " catching "

the

>deafness bug lol lol It takes alot of getting used to and just when you

>think your on top of it something happens to remind you that you might not

>be as normal as other people,so I can certainly feel for your son and the

>adjustments he is going thru.

>Take Care Australia

> Re: New Member

>

>

>> Welcome

>> My son is 22 and had his last surgery in June and has been totally

deaf

>since

>> then. He doesn't have any of the other problems that you asked about but

>is

>> still adjusting to the deafness. He doesn't have much of a social life

>which

>> sometimes is upsetting to him. I guess part of the adjusting period. Do

>you

>> have trouble being with groups of people or getting involved in things?

>It

>> sounds like you have been through a lot already Best Wishes Sue from

>Ohio.

>>

>> Jennette Braaten wrote:

>>

>> > Name:

>> > Location: Western Australia

>> > email: rimme@...

>> > Relationship: Patient

>> >

>> > Why I'd like to join:

>> > I\'m 27 and have been deaf for just over a year from acoustic

neuromas.

>I

>> > had quite a few operations and am getting a bit fed up of it lol lol. I

>also

>> > have Lupus (SLE) and would be interested if anyone else has that as

well

>as

>> > NF2. Also I would like to know if anyone else has had a stroke as my

>doctors

>> > feel that NF2 might have caused mine.

>> >

>> >

>> >

>> >

[Guest guest]

Nope - I don't.. because you should be living in Australia where it is warm

in winter tooooooo.

But then again if I came over you could keep me warm with all those recopies

you have written.. and I would have an excuse to have hot toddies, not that

I need an excuse....

We will just have to have COLD toddies when you get hear... you will have to

leave L behind as I have been told she is a party ANIMAL.....

As you know I am very shy......

Bri....

New Member

> Sandy

> Welcome to the crew!!!!I Hope we can help you out. You will get lots of

> support here as well as answers to many questions.

> Marnie (in ccccccccold snowy Canada where it is -35C today!!!)

> Bri ..don't ya feel sorry for me??

>

>

>

>

>

[Guest guest]

Oh dear - I was supposed to say welcome to Sandy -- don't hit me Sandy ---

you will find some very nice people here........

- in sunny - just the right temp 28 c in Queensland Australia......

New Member

>

>

> > Sandy

> > Welcome to the crew!!!!I Hope we can help you out. You will get lots of

> > support here as well as answers to many questions.

> > Marnie (in ccccccccold snowy Canada where it is -35C today!!!)

> > Bri ..don't ya feel sorry for me??

> >

> >

> >

> >

> >

[Guest guest]

Marnie, we had 74*F, sunny, picture perfect weather here in Chandler, AZ.

Sorry but I just couldn't resist replying. JD

New Member

SandyWelcome to the crew!!!!I Hope we can help you out. You will get lots of support here as well as answers to many questions.Marnie (in ccccccccold snowy Canada where it is -35C today!!!)Bri ..don't ya feel sorry for me??

[Guest guest]

Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard.

We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri.... Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

Yer - right ....

Bri...

Re: New Member

Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard.

We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri....

Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

I was afraid he meant me:) I was adding too his "drinks to buy Lowi list:)"!! Lowi who would likes to drink on a guys dime:)

Re: New Member

Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard.

We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri....

Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

We will do that in June... Bring plenty of your dimes......

Re: New Member

Ok Bri you spreading stories about me again, if there is a party i will try and have a good time but i am sooooo shy it will be hard.

We will just have to have COLD toddies when you get hear... you will have to leave L behind as I have been told she is a party ANIMAL..... As you know I am very shy...... Bri....

Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

Hi --since your symptoms are manageable you are in an excellent

position to research your options. Many women on this list have had myos or

UAEs. One thing I think this group agrees on is that choosing a treatment,

whether alternative or surgery, is a very individual process that involves

time and research. The fact that your gyno's first suggestion was myo and

not hysterectomy is noteworthy. Surgery is always a risk and outcomes are

variable no matter what procedure you undergo, so take your time and read,

read, read, read.

Faryl

> I am new to this group. I am 40 years old and I have several

> fibroids. The largests one is the size of a 14 week pregnancy. My

> symptoms have changed recently within the last year. The excessive

> bleeding lasts one day and my periods are shorter. I still feel the

> fatigue and the lower back pain. I am taking ferro-sequels, but I am

> currently not anemic. My gynocologist has suggested a myomectomy but

> since my symptoms are manageable, I am very undecided. What do you

> folks think?

>

>

[Guest guest]

Hello my name is Kim.

I am so glad that you could join us and sad that you have to. If there is anything that I can help you with just please let me know. I have not been with the group for very long but I had a very warm welcome and made to feel right at home. I am on AOL,MSN and Yhoo if you would like to put me on your buddy list I would love to chat with you, I am on just about all the time unless I am having a bad flare up and then I will stay in bed. Well, I just wanted to say welcome,

Take care my new friend and I hope to hear from you soon.

Kim

-- New Member

My name is and I am a new member. I have had RSD for about 3 years and I'm on my 3rd doctor. My first doctor had me on too much medicine but my current one does not have my on enough. I used to belong to a few groups but as member posts became fewer and fewer I stopped checking in on the group. It is strange to know details of peoples lives that you will more than likely never "meet". I plan to read the group's messages daily and respond when I can. I read some posts from a member from Louisiana, which is my home state. I was wonderful which city Ms. Ducote is from. I know some Ducotes from Mandeville and River Ridge.

[Guest guest]

Hello

Welcome to the group. My name is Laurie and I'm a few states north of you in

MINNESOTA. Feel free to e-mail me at lroepke@....

Hope you will find many more warm welcomes.

Laurie

[Guest guest]

HI, Diane,

Welcome to the group! So glad to have you join us!

How old are you, Diane? I know that should you be

nearing menopause, or if you're estrogen dominant

you could easily add natural progesterone cream

and it's proven to add bone.

However, I seriously doubt that you'll lose bone due

to thyroid treatment. Let us know the results to your

bone scan as well. It's probably a good thing to get

a baseline reading anyway.

in Va.

Hi,

I recently joined this list because I am on Armour Thyroid and have

been for years. However, having moved to Charlotte, NC a couple of

years ago I find the doctor I am using is very concerned about

my " running high " on my blood tests.

Previously, I went to an endocrinologist in the Boston area who felt

that this is what works for me and it was OK.

My current doctor, not an endocrinologist, tells me that it is Ok

but that he is concerned about bone loss and wants me to have

regular bone scans.

Anyone have any experience with this? I will get my test results

from the doctor's office tomorrow on the thyroid test and post them

for your input.

Thank you.

Diane

[Guest guest]

If it involves a very high Free T4 for a long ongoing period (and this would

be up and over range for awhile), then it might be a risk, but otherwise, an

emphatic NO. A low TSH does not denote thyroid hormone, since it is a

pituitary hormone that either stimulates (higher) or doesn't stimulate the

thyroid (low) to make more hormone. All bets are off on TSH, when a person

takes thyroid hormone from the outside of the body. If a person feels good

and has no hyper symptoms, then their body is handling the thyroid hormone

correctly and it's not too much for THEM. Hypothyroid chronically speaking,

is much more of a risk for osteoporosis than this could ever be. Doctors

are so confused and unlearned about what the function of the TSH is, due to

wrong training and brainwashing by what the makers of T4 meds have to say

about all this, because they are geared t'wd selling their products.

new member

> Hi,

> I recently joined this list because I am on Armour Thyroid and have

> been for years. However, having moved to Charlotte, NC a couple of

> years ago I find the doctor I am using is very concerned about

> my " running high " on my blood tests.

> Previously, I went to an endocrinologist in the Boston area who felt

> that this is what works for me and it was OK.

> My current doctor, not an endocrinologist, tells me that it is Ok

> but that he is concerned about bone loss and wants me to have

> regular bone scans.

> Anyone have any experience with this? I will get my test results

> from the doctor's office tomorrow on the thyroid test and post them

> for your input.

> Thank you.

> Diane

[Guest guest]

Nice to see you Sue.

Lou

Sue wrote:

>

> I've actually been on the list for a couple of months, but have been

> lurking in the shadows. I am a type 2 diabetic controlled by diet,

> exercise, and oral medications. I have been diagnosed for about ten

> years, but I believe that I had had diabetes for years before diagnosis.

>

> Some of you know me as GrannySue on the diabetesworld mailing list. I

> am still in that group, but missed all of the refugees. I emailed

> Lou, who gave me directions on how to join. I've just been soaking up

> all of the knowledge.

>

> Sue

>

> -

[Guest guest]

Nice to see you Sue.

Lou

Sue wrote:

>

> I've actually been on the list for a couple of months, but have been

> lurking in the shadows. I am a type 2 diabetic controlled by diet,

> exercise, and oral medications. I have been diagnosed for about ten

> years, but I believe that I had had diabetes for years before diagnosis.

>

> Some of you know me as GrannySue on the diabetesworld mailing list. I

> am still in that group, but missed all of the refugees. I emailed

> Lou, who gave me directions on how to join. I've just been soaking up

> all of the knowledge.

>

> Sue

>

> -

[Guest guest]

Nice to see you Sue.

Lou

Sue wrote:

>

> I've actually been on the list for a couple of months, but have been

> lurking in the shadows. I am a type 2 diabetic controlled by diet,

> exercise, and oral medications. I have been diagnosed for about ten

> years, but I believe that I had had diabetes for years before diagnosis.

>

> Some of you know me as GrannySue on the diabetesworld mailing list. I

> am still in that group, but missed all of the refugees. I emailed

> Lou, who gave me directions on how to join. I've just been soaking up

> all of the knowledge.

>

> Sue

>

> -

[Guest guest]

Hi, there, Sue!

Vicki, waving wildly

New Member

>

> I've actually been on the list for a couple of months, but have been

> lurking in the shadows. I am a type 2 diabetic controlled by diet,

> exercise, and oral medications. I have been diagnosed for about ten

> years, but I believe that I had had diabetes for years before

> diagnosis.

>

> Some of you know me as GrannySue on the diabetesworld mailing list. I

> am still in that group, but missed all of the refugees. I emailed

> Lou, who gave me directions on how to join. I've just been soaking up

> all of the knowledge.

>

> Sue

>

[Guest guest]

Hello Beverley and welcome to our group.

Judging by my experience, you will find belonging a great help in

denying denial and keeping on with your treatment.

We have lofty goals here that we talk about a LOT: Most of us want to

get our numbers as close to non-diabetic as we can, thereby winning a

healthy life.

Some of us already know what happens when you are uncontrolled enough to

begin to suffer with consequences. Me, for one. I have extensive

neuropathy; however my eyes, kidneys and cardiac system are in excellent

condition. I want to keep all the function I can.

Being here with others who feel mostly the same, who have the same

difficulties I encounter trying for tight control, is inspiring. Plus

there is a lot of information from members who speak from their own

experiences.

I think you will find you are in a good place here.

Helen

[Guest guest]

LOL Beverly,

I have two reasons for continuing to be on diabetes mailing lists

after 7 years .. one is to keep up with the latest and to learn from

others successes, failures etc. The second is so that every day I am

forced to remember I am a diabetic. I need to be told every day. It

keeps me thinking about diet, bgs, exercise and other things it would

be very convenient to 'forget'.

Suzz, t2, d & e, dx97

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

> My reason for joining a group like this is my constant fall into

denial and complacency. I hope through daily reading from this group,

denial won't happen as much. Thank you for letting me join, bye for

now Beverley.

> ----------

[Guest guest]

Another reason I keep up after 7+ years with the " 800 pound gorilla, " as

Susie used to call diabetes, is that you've all become my Diabetic

Family and you're very important to me. Some people come and go ...and

then there's the old faithfuls...like Tootie...and Ressie...and

Helen...and Suzz...and many others.

It means a lot to me that I can share what I've learned about diabetes

and good diabetic control and hopefully, motivate at least a few people

and save them from the dreaded consequences of poor control.

Vicki

Re: new member

>

>

> LOL Beverly,

>

> I have two reasons for continuing to be on diabetes mailing lists

> after 7 years .. one is to keep up with the latest and to learn from

> others successes, failures etc. The second is so that every day I am

> forced to remember I am a diabetic. I need to be told every day. It

> keeps me thinking about diet, bgs, exercise and other things it would

> be very convenient to 'forget'.

>

> Suzz, t2, d & e, dx97

>

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

>> My reason for joining a group like this is my constant fall into

> denial and complacency. I hope through daily reading from this group,

> denial won't happen as much. Thank you for letting me join, bye for

> now Beverley.

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

[Guest guest]

it means a lot to newbies to the list to have you here. Ive been in denial too

long. Have my right wrist in a cast so just thanks

barb in nh

-----

It means a lot to me that I can share what I've learned about diabetes

and good diabetic control and hopefully, motivate at least a few people

and save them from the dreaded consequences of poor control.

Vicki

----- Original Message -----

> I have two reasons for continuing to be on diabetes mailing lists

> after 7 years .. one is to keep up with the latest and to learn from

> others successes, failures etc. The second is so that every day I am

> forced to remember I am a diabetic. I need to be told every day. It

> keeps me thinking about diet, bgs, exercise and other things it would

> be very convenient to 'forget'.

>

> Suzz, t2, d & e, dx97

>