introduction

[Guest guest]

Hi Anne

Thanks Anne believe it or not I woke up with another cold this morning.

Maybe its fear of surgery coming out as a cold. I hope not because I'm ready

to put this behind me.

My story is on any given day I change my mind from a myo to a hyst. My

doctor has schedule me for a myo because it requires more or time but will

allow me to change to a hyst up until the last minute. At this point I am

leaning towards a hyst. the reasons are as follows: I'm more scared of

regrowth then I am of not having my uterus. My fibroid grew to about

17/18cm in less than a year. mine has been very symptomatic. I don't plan on

having children. I have 3 friends that have all had hyst. None have

experience any problems. One slightly regrets it because she didn't know

about other options. She didn't want more kids she just felt like her choice

was taken away. the decision is probably harder then the surgery. I've been

reading the posts on this board for awhile.(I think about 6 months) most

seem to be encouraging myos over hyst. although most people on this board

recognize its one's own choice. I'm grateful for all that I've learned on

this board and everyone has been very kind and supportive. However sometimes

its so much information it can be confusing.

Good Luck in your choices

Re: Introduction

> > Date: Mon, Jan 28, 2002, 8:15 AM

> >

> >

> > hi anne,

> > i go for my 2nd dose of lupron on february 11th. my doctor told me they

> > need

> > to be 28 days apart. is this also what you were told? i was so glad to

> hear

> > you mention the headaches, i too have been experiencing headaches every

> day

> > the past week. i am calling my doctor today to see what he has to say

> about

> > that and i will let you know what he says. since i have wrote you i

have

> > also had hot flashes but not very bad and certainly i can live with

them,

> > and

> > so far they are only happening at night. did your doc tell u to take

> 1000

> > mg of calcium while on lupron? my doctor told me to. have you

> experienced

> > any aching joints? i have and will be asking my doctor about this also

and

> > will fill you in.

> > thanks anne,

> > laura

> >

> >

[Guest guest]

In a message dated 2/21/02 7:41:22 AM Pacific Standard Time,

sidhe@... writes:

> . I asked my doctor about it, and she balked because she

> thought the procedure too painful.

Perhaps it was " too painful " for her doing it on a patient who was awake. . .

.. .

Thanks for sharing. I'll keep your story in mind the next time I'm only

offered one " option " .

Cheryl

[Guest guest]

In a message dated 2/21/02 7:41:22 AM Pacific Standard Time,

sidhe@... writes:

> . I asked my doctor about it, and she balked because she

> thought the procedure too painful.

Perhaps it was " too painful " for her doing it on a patient who was awake. . .

.. .

Thanks for sharing. I'll keep your story in mind the next time I'm only

offered one " option " .

Cheryl

[Guest guest]

Hi ,

I am from Oshawa but I seen Dr. Sved in Toronto for my myo. I

think he could be the one to go with. I know when I do get pregnant

that is the one I want for my pregnancy, since he knows how the myo

was performed since he was the one and I feel really comfortable with

him too. He does all his deliveries at Mount Sinai Hospital, since

with us it will be done by c-section but with we could go natural he

delivers all his patients. Feel free to email me personally at

loneyprpn@.... Hopefully this will help.

> Hi all,

>

> Just discovered this list yesterday and signed up.

>

> I discovered that I had fibroids this past summer, in Paris, on my

> honeymoon, after bleeding for two weeks straight.

>

> A month after I returned home I ended up in the hospital with severe

> anemia and needed six units of blood.

>

> Two fibroids, one in the cavity (no one is still sure if it was a

> fibroid or a polyp), the other submucosal. Although they were small

> because of the bleeding, which could only be controlled by high dose

> birth control, I had a myomectomy (abdominal) to have them removed

in

> October.

>

> The gyn I ended up with, after some searching, did do an endometrial

> biopsy, hysterosonogram, no MRI ( I live in Canada and the wait can

be

> long). He also found some cervical polyps and removed them, biopsied

> them too but no problem.

>

> Just found out I'm pregnant (the reason for myo as opposed to other

> treatments, I'm 33 just married and want kids). In fact I'm off to

my

> doctor shortly to confirm.

>

> Has anyone on the list experienced pregnancy & childbirth after myo?

> I've been told that I will have to have a C section.

>

> Don't have an ob yet...If anyone on the list is from the Toronto

area (I

> live just north of the city) and knows of a good ob who has

experience

> with pregnancy after fibroids please let me know.

>

> Incidentally, my mother had post menopausal bleeding, was diagnosed

with

> fibroids, had an " office D & C " , and has yet to have any further

problems.

> Also a friend of hers has large fibroids and had bleeding, had an

> ablation, which stopped the bleeding, but now I think regrets not

having

> myo when she had the chance. They are telling her now that her

fibroids

> are too big for myo and she would have to have a hysterectomy.

>

>

>

> Please forgive me if some of my questions have already been answered

> previously on the list.

[Guest guest]

Hi ,

I am from Oshawa but I seen Dr. Sved in Toronto for my myo. I

think he could be the one to go with. I know when I do get pregnant

that is the one I want for my pregnancy, since he knows how the myo

was performed since he was the one and I feel really comfortable with

him too. He does all his deliveries at Mount Sinai Hospital, since

with us it will be done by c-section but with we could go natural he

delivers all his patients. Feel free to email me personally at

loneyprpn@.... Hopefully this will help.

> Hi all,

>

> Just discovered this list yesterday and signed up.

>

> I discovered that I had fibroids this past summer, in Paris, on my

> honeymoon, after bleeding for two weeks straight.

>

> A month after I returned home I ended up in the hospital with severe

> anemia and needed six units of blood.

>

> Two fibroids, one in the cavity (no one is still sure if it was a

> fibroid or a polyp), the other submucosal. Although they were small

> because of the bleeding, which could only be controlled by high dose

> birth control, I had a myomectomy (abdominal) to have them removed

in

> October.

>

> The gyn I ended up with, after some searching, did do an endometrial

> biopsy, hysterosonogram, no MRI ( I live in Canada and the wait can

be

> long). He also found some cervical polyps and removed them, biopsied

> them too but no problem.

>

> Just found out I'm pregnant (the reason for myo as opposed to other

> treatments, I'm 33 just married and want kids). In fact I'm off to

my

> doctor shortly to confirm.

>

> Has anyone on the list experienced pregnancy & childbirth after myo?

> I've been told that I will have to have a C section.

>

> Don't have an ob yet...If anyone on the list is from the Toronto

area (I

> live just north of the city) and knows of a good ob who has

experience

> with pregnancy after fibroids please let me know.

>

> Incidentally, my mother had post menopausal bleeding, was diagnosed

with

> fibroids, had an " office D & C " , and has yet to have any further

problems.

> Also a friend of hers has large fibroids and had bleeding, had an

> ablation, which stopped the bleeding, but now I think regrets not

having

> myo when she had the chance. They are telling her now that her

fibroids

> are too big for myo and she would have to have a hysterectomy.

>

>

>

> Please forgive me if some of my questions have already been answered

> previously on the list.

[Guest guest]

Hi ,

I am from Oshawa but I seen Dr. Sved in Toronto for my myo. I

think he could be the one to go with. I know when I do get pregnant

that is the one I want for my pregnancy, since he knows how the myo

was performed since he was the one and I feel really comfortable with

him too. He does all his deliveries at Mount Sinai Hospital, since

with us it will be done by c-section but with we could go natural he

delivers all his patients. Feel free to email me personally at

loneyprpn@.... Hopefully this will help.

> Hi all,

>

> Just discovered this list yesterday and signed up.

>

> I discovered that I had fibroids this past summer, in Paris, on my

> honeymoon, after bleeding for two weeks straight.

>

> A month after I returned home I ended up in the hospital with severe

> anemia and needed six units of blood.

>

> Two fibroids, one in the cavity (no one is still sure if it was a

> fibroid or a polyp), the other submucosal. Although they were small

> because of the bleeding, which could only be controlled by high dose

> birth control, I had a myomectomy (abdominal) to have them removed

in

> October.

>

> The gyn I ended up with, after some searching, did do an endometrial

> biopsy, hysterosonogram, no MRI ( I live in Canada and the wait can

be

> long). He also found some cervical polyps and removed them, biopsied

> them too but no problem.

>

> Just found out I'm pregnant (the reason for myo as opposed to other

> treatments, I'm 33 just married and want kids). In fact I'm off to

my

> doctor shortly to confirm.

>

> Has anyone on the list experienced pregnancy & childbirth after myo?

> I've been told that I will have to have a C section.

>

> Don't have an ob yet...If anyone on the list is from the Toronto

area (I

> live just north of the city) and knows of a good ob who has

experience

> with pregnancy after fibroids please let me know.

>

> Incidentally, my mother had post menopausal bleeding, was diagnosed

with

> fibroids, had an " office D & C " , and has yet to have any further

problems.

> Also a friend of hers has large fibroids and had bleeding, had an

> ablation, which stopped the bleeding, but now I think regrets not

having

> myo when she had the chance. They are telling her now that her

fibroids

> are too big for myo and she would have to have a hysterectomy.

>

>

>

> Please forgive me if some of my questions have already been answered

> previously on the list.

[Guest guest]

I would tell your friend not to accept her doctor's statement that her

fibroids are too big for a myomectomy without getting another opinion first.

Mine is very large--one of the larger ones my ultrasound technician (in a

large university hospital) has seen. I am having a myo in June, and while

the doctor offered Lupron to shrink the fibroid first, he said it isn't

necessary. I only have one, but I still think she should check elsewhere.

Congratulations, by the way--how exciting! I didn't have a c-section after

myo, but I did have a c-section. You'll be fine. It wasn't that bad. I

think the worst was that mine was an emergency c-section because my son's

heart rate took a sudden nosedive, so I was under general anesthesia, and it

felt a little like I " went away " and missed his birth altogether! After 19

hours of labor with very little progress, though, I just wanted it over and

done with! ;-)

Dorie

Introduction

> Hi all,

>

> Just discovered this list yesterday and signed up.

>

> I discovered that I had fibroids this past summer, in Paris, on my

> honeymoon, after bleeding for two weeks straight.

>

> A month after I returned home I ended up in the hospital with severe

> anemia and needed six units of blood.

>

> Two fibroids, one in the cavity (no one is still sure if it was a

> fibroid or a polyp), the other submucosal. Although they were small

> because of the bleeding, which could only be controlled by high dose

> birth control, I had a myomectomy (abdominal) to have them removed in

> October.

>

> The gyn I ended up with, after some searching, did do an endometrial

> biopsy, hysterosonogram, no MRI ( I live in Canada and the wait can be

> long). He also found some cervical polyps and removed them, biopsied

> them too but no problem.

>

> Just found out I'm pregnant (the reason for myo as opposed to other

> treatments, I'm 33 just married and want kids). In fact I'm off to my

> doctor shortly to confirm.

>

> Has anyone on the list experienced pregnancy & childbirth after myo?

> I've been told that I will have to have a C section.

>

> Don't have an ob yet...If anyone on the list is from the Toronto area (I

> live just north of the city) and knows of a good ob who has experience

> with pregnancy after fibroids please let me know.

>

> Incidentally, my mother had post menopausal bleeding, was diagnosed with

> fibroids, had an " office D & C " , and has yet to have any further problems.

> Also a friend of hers has large fibroids and had bleeding, had an

> ablation, which stopped the bleeding, but now I think regrets not having

> myo when she had the chance. They are telling her now that her fibroids

> are too big for myo and she would have to have a hysterectomy.

>

>

>

> Please forgive me if some of my questions have already been answered

> previously on the list.

>

>

>

>

>

[Guest guest]

I would tell your friend not to accept her doctor's statement that her

fibroids are too big for a myomectomy without getting another opinion first.

Mine is very large--one of the larger ones my ultrasound technician (in a

large university hospital) has seen. I am having a myo in June, and while

the doctor offered Lupron to shrink the fibroid first, he said it isn't

necessary. I only have one, but I still think she should check elsewhere.

Congratulations, by the way--how exciting! I didn't have a c-section after

myo, but I did have a c-section. You'll be fine. It wasn't that bad. I

think the worst was that mine was an emergency c-section because my son's

heart rate took a sudden nosedive, so I was under general anesthesia, and it

felt a little like I " went away " and missed his birth altogether! After 19

hours of labor with very little progress, though, I just wanted it over and

done with! ;-)

Dorie

Introduction

> Hi all,

>

> Just discovered this list yesterday and signed up.

>

> I discovered that I had fibroids this past summer, in Paris, on my

> honeymoon, after bleeding for two weeks straight.

>

> A month after I returned home I ended up in the hospital with severe

> anemia and needed six units of blood.

>

> Two fibroids, one in the cavity (no one is still sure if it was a

> fibroid or a polyp), the other submucosal. Although they were small

> because of the bleeding, which could only be controlled by high dose

> birth control, I had a myomectomy (abdominal) to have them removed in

> October.

>

> The gyn I ended up with, after some searching, did do an endometrial

> biopsy, hysterosonogram, no MRI ( I live in Canada and the wait can be

> long). He also found some cervical polyps and removed them, biopsied

> them too but no problem.

>

> Just found out I'm pregnant (the reason for myo as opposed to other

> treatments, I'm 33 just married and want kids). In fact I'm off to my

> doctor shortly to confirm.

>

> Has anyone on the list experienced pregnancy & childbirth after myo?

> I've been told that I will have to have a C section.

>

> Don't have an ob yet...If anyone on the list is from the Toronto area (I

> live just north of the city) and knows of a good ob who has experience

> with pregnancy after fibroids please let me know.

>

> Incidentally, my mother had post menopausal bleeding, was diagnosed with

> fibroids, had an " office D & C " , and has yet to have any further problems.

> Also a friend of hers has large fibroids and had bleeding, had an

> ablation, which stopped the bleeding, but now I think regrets not having

> myo when she had the chance. They are telling her now that her fibroids

> are too big for myo and she would have to have a hysterectomy.

>

>

>

> Please forgive me if some of my questions have already been answered

> previously on the list.

>

>

>

>

>

[Guest guest]

I would tell your friend not to accept her doctor's statement that her

fibroids are too big for a myomectomy without getting another opinion first.

Mine is very large--one of the larger ones my ultrasound technician (in a

large university hospital) has seen. I am having a myo in June, and while

the doctor offered Lupron to shrink the fibroid first, he said it isn't

necessary. I only have one, but I still think she should check elsewhere.

Congratulations, by the way--how exciting! I didn't have a c-section after

myo, but I did have a c-section. You'll be fine. It wasn't that bad. I

think the worst was that mine was an emergency c-section because my son's

heart rate took a sudden nosedive, so I was under general anesthesia, and it

felt a little like I " went away " and missed his birth altogether! After 19

hours of labor with very little progress, though, I just wanted it over and

done with! ;-)

Dorie

Introduction

> Hi all,

>

> Just discovered this list yesterday and signed up.

>

> I discovered that I had fibroids this past summer, in Paris, on my

> honeymoon, after bleeding for two weeks straight.

>

> A month after I returned home I ended up in the hospital with severe

> anemia and needed six units of blood.

>

> Two fibroids, one in the cavity (no one is still sure if it was a

> fibroid or a polyp), the other submucosal. Although they were small

> because of the bleeding, which could only be controlled by high dose

> birth control, I had a myomectomy (abdominal) to have them removed in

> October.

>

> The gyn I ended up with, after some searching, did do an endometrial

> biopsy, hysterosonogram, no MRI ( I live in Canada and the wait can be

> long). He also found some cervical polyps and removed them, biopsied

> them too but no problem.

>

> Just found out I'm pregnant (the reason for myo as opposed to other

> treatments, I'm 33 just married and want kids). In fact I'm off to my

> doctor shortly to confirm.

>

> Has anyone on the list experienced pregnancy & childbirth after myo?

> I've been told that I will have to have a C section.

>

> Don't have an ob yet...If anyone on the list is from the Toronto area (I

> live just north of the city) and knows of a good ob who has experience

> with pregnancy after fibroids please let me know.

>

> Incidentally, my mother had post menopausal bleeding, was diagnosed with

> fibroids, had an " office D & C " , and has yet to have any further problems.

> Also a friend of hers has large fibroids and had bleeding, had an

> ablation, which stopped the bleeding, but now I think regrets not having

> myo when she had the chance. They are telling her now that her fibroids

> are too big for myo and she would have to have a hysterectomy.

>

>

>

> Please forgive me if some of my questions have already been answered

> previously on the list.

>

>

>

>

>

[Guest guest]

I don't think it was a D & C in the same way that it would be in the hospital

under a general, that's

just how it was referred to. Not sure what the exact procedure was.

SiCanto@... wrote:

> In a message dated 2/21/02 6:48:19 AM Pacific Standard Time,

> jeffstef@... writes:

>

> > Incidentally, my mother had post menopausal bleeding, was diagnosed with

> > fibroids, had an " office D & C " , and has yet to have any further problems.

> >

>

> My first gyn never told me that " in-office " was an option for D & C. She said

> that it had to be done in the hospital with a general anesthesia.

> Cheryl

>

>

[Guest guest]

I don't think it was a D & C in the same way that it would be in the hospital

under a general, that's

just how it was referred to. Not sure what the exact procedure was.

SiCanto@... wrote:

> In a message dated 2/21/02 6:48:19 AM Pacific Standard Time,

> jeffstef@... writes:

>

> > Incidentally, my mother had post menopausal bleeding, was diagnosed with

> > fibroids, had an " office D & C " , and has yet to have any further problems.

> >

>

> My first gyn never told me that " in-office " was an option for D & C. She said

> that it had to be done in the hospital with a general anesthesia.

> Cheryl

>

>

[Guest guest]

Hi Diann, I had a resection for a 3cm fibroid in January. The

procedure was a breeze (for me at least). I had no pain afterward

and returned to normal activity the next day. I had thought that

3cm was about the biggest that they like to remove this way, but

that may be one reason why they have you on Lupron - to shrink the

fibroid. As far as this fibroid growing back - my understanding is

that once you completely remove a fibroid it is gone, however your

propensity to have fibroids is still there, so you may develop new

ones. But I imagine at age 49 that would not be as big a concern as

it would be for a 35 year old, as menopause tends to shrink the

fibroids. One thing that has been mentioned about Lupron in this

group is that it can shrink small fibroids so much that the surgeon

can't see them to remove them and they can grow after the procedure.

>

> Hi,

>

> I'm new to this group and thought I'd introduce myself. I'm

Diann, 49 (the big 50 looms ahead in August!). I've had extremely

heavy and clotty periods for the past 7 or 8 months and when I was

examined by my gyno in Feb she did an endometrial biopsy which

revealed polyps and I was scheduled for a D & C and hysteroscopy. She

also sent me for a pelvic sonogram. The D & C/hys. was scheduled to

take place next Tuesday. When I saw my doctor this week she

reviewed the results of the sonogram (she had only gotten the

results that day), she said that the sonogram showed that I have a

4.6 centimeter fibroid in my uterus. That could very well be the

primary source of the heavy bleeding, so obviously just doing the

D & C wasn't going to be all I needed. My doctor said for the fibroid

I would need a hysteroscopy and resection. She doesn't do

resections and I've been referred to a surgeon who does. I got a

Lupron injection to stop my periods and will have another one in 30

days. After the second injection they'll do the surgery. I'm just

glad my dr. discovered the fibroid before they had me come in for

the D & C and then discover I had to come back for the resection!

>

> I've always had heavy periods--from my first one at age 12 to

present time, so I didn't really suspect anything ususal was going

on until in February I had a period that lasted 3-1/2 weeks!! I was

thinking, since I'm in the years preceding menopause, that this was

an irregular period and probably signaled something going on with

menopause. During the past year my periods have been slightly

irregular. But my hormone levels tested ok and then the biopsy

found the polyps. So I'm in new territory here. I know so many of

you have similar stories to mine. My question is about fibroid

regrowth. What if I have this fibroid removed and it grows right

back? I'm not sure how fast a regrowth I'd have but I'm hopefully

winding down the baby factory -- have no kids though and my hope

is my estrogen level will be falling and that would keep the fibroid

(s) (I have two other tiny ones on the outside of the uterus that

don't give me problems) from growing.

>

> In any event, that's my story. I'm glad to have found this group

and hope to learn a lot!

>

> Diann

>

>

>

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

>

[Guest guest]

, you got good news PLS is a blessing compared to ALS. Your husband

has PLS and will live a long time. Some PLS'er have had this " sucky " disease

for over 20 years. Some have more disability then others, luckily I have had

this for 7 seven years and for the most part have had a slow progression and

remained at the same level. I have given up work due to extreme fatigue.

Please ask us any questions you might have. It sounds like you have your

plate full but this is a fine group of people with a lot of experience in

many areas so ask away.

Flora Brand

St. sburg, FL

[Guest guest]

, you got good news PLS is a blessing compared to ALS. Your husband

has PLS and will live a long time. Some PLS'er have had this " sucky " disease

for over 20 years. Some have more disability then others, luckily I have had

this for 7 seven years and for the most part have had a slow progression and

remained at the same level. I have given up work due to extreme fatigue.

Please ask us any questions you might have. It sounds like you have your

plate full but this is a fine group of people with a lot of experience in

many areas so ask away.

Flora Brand

St. sburg, FL

[Guest guest]

Rita, you said it much better then I did.......

Flora

[Guest guest]

Rita, you said it much better then I did.......

Flora

[Guest guest]

Hi ,

I live in W Knoxville and after 12 years of " having MS " , I finally found a

Neuro who knew a belly button from a hole in the ground. I now have PLS and

consider that a giant leap upward. That dx got me off of steroids (read

that as cataracts and liver damage) and immuno-suppressant drugs.

Look at it this way: may die with PLS (when he's an old man), but

he won't die from having it. You will find that some of us have had this

^ & *%$#@ malady for 20 years or more.

Welcome to PLS Friends. You and will find this group to be the most

supportive, informative, knowledgeable, loving, kind, friendly and sharing

group I know of anywhere. We poke fun at ourselves (sometimes each other),

our actions and our " problems " , but we will be sympathetic and uplifting to

each other when the " down " times hit. You don't ever have to like PLS (many

days you will hate it and be very frustrated at it and by it), but you will

learn to live with it.

Feel free to vent your frustrations. Chances are most of us and/or our

caregiver have had the same ones. Ask any question and you will get many

responses. There are only two kinds of questions, the ones that get asked

and the ones that don't.

Again, welcome to the group. Every one of us were " new " at one time, but I

think you will be amazed at the number of friends you suddenly have.

Vaughn

Pain is inevitable. Misery is optional.

[Guest guest]

Hi , and Welcome.

I'm so sorry that one more thing has been added to your already full plate.

This is the right place to come to, as you will get lots of love, support,

information, and friendship.

I have PLS, am 54, and was diagnosed in 9/99. I am very lucky to be quite

mildly affected as of yet. Mine has progressed quite slowly. I have still been

working, but I don't know if I can for much longer. My biggest problem is

overwhelming fatigue. I found this PLS site the first week after I was

diagnosed, and am so very thankful. These people are great! Take care of

yourself, dear, and I hope your hubby's PLS goes slowly like mine has.

Hugs,

Laurel

Introduction

My name is , and my husband has just been diagnosed with PLS after a

long long round of tests and a first diagnosis of ALS. We live in Tennessee, but

we are seeking treatment at the Carolinas ALS institute. Our first visit was on

the 28th of October, when Dr. Rosenfeld gave us the news that had PLS

instead of ALS. We still haven't decided if it's good or bad news, frankly. But

we are going to enroll in just about any study we find, and are going to try to

make the best of things. is 34 and I am 35. We have no children, though

we desperately wanted them. I went through many many infertility treatments. But

now I guess it's a blessing.

Anyway, I just wanted to say hello and hope that I will find some support. I'm

sorely in need of it. My mother has terminal cancer and my father is slowly

dying in a nursing home, and I am an only child. Feeling pretty isolated, to say

the least!

So, it's nice to " meet " you, and I hope to hear from you soon.

Peace, and may all be auspicious,

Ohm Ma Ni Pad Me Hum

" May all being be free from suffering and the causes of suffering "

[Guest guest]

Hi , and Welcome.

I'm so sorry that one more thing has been added to your already full plate.

This is the right place to come to, as you will get lots of love, support,

information, and friendship.

I have PLS, am 54, and was diagnosed in 9/99. I am very lucky to be quite

mildly affected as of yet. Mine has progressed quite slowly. I have still been

working, but I don't know if I can for much longer. My biggest problem is

overwhelming fatigue. I found this PLS site the first week after I was

diagnosed, and am so very thankful. These people are great! Take care of

yourself, dear, and I hope your hubby's PLS goes slowly like mine has.

Hugs,

Laurel

Introduction

My name is , and my husband has just been diagnosed with PLS after a

long long round of tests and a first diagnosis of ALS. We live in Tennessee, but

we are seeking treatment at the Carolinas ALS institute. Our first visit was on

the 28th of October, when Dr. Rosenfeld gave us the news that had PLS

instead of ALS. We still haven't decided if it's good or bad news, frankly. But

we are going to enroll in just about any study we find, and are going to try to

make the best of things. is 34 and I am 35. We have no children, though

we desperately wanted them. I went through many many infertility treatments. But

now I guess it's a blessing.

Anyway, I just wanted to say hello and hope that I will find some support. I'm

sorely in need of it. My mother has terminal cancer and my father is slowly

dying in a nursing home, and I am an only child. Feeling pretty isolated, to say

the least!

So, it's nice to " meet " you, and I hope to hear from you soon.

Peace, and may all be auspicious,

Ohm Ma Ni Pad Me Hum

" May all being be free from suffering and the causes of suffering "

[Guest guest]

You live in W Knoxville? What a coincidence it that???? ***WE*** live in West

Knoxville!!!!!

There must me an " Brakovich " story in here somewhere!

Peace, and may all be auspicious,

Ohm Ma Ni Pad Me Hum

" May all beings be free from suffering and the causes of suffering

Re: Introduction

Hi ,

I live in W Knoxville and after 12 years of " having MS " , I finally found a

Neuro who knew a belly button from a hole in the ground. I now have PLS and

consider that a giant leap upward. That dx got me off of steroids (read

that as cataracts and liver damage) and immuno-suppressant drugs.

Look at it this way: may die with PLS (when he's an old man), but

he won't die from having it. You will find that some of us have had this

^ & *%$#@ malady for 20 years or more.

Welcome to PLS Friends. You and will find this group to be the most

supportive, informative, knowledgeable, loving, kind, friendly and sharing

group I know of anywhere. We poke fun at ourselves (sometimes each other),

our actions and our " problems " , but we will be sympathetic and uplifting to

each other when the " down " times hit. You don't ever have to like PLS (many

days you will hate it and be very frustrated at it and by it), but you will

learn to live with it.

Feel free to vent your frustrations. Chances are most of us and/or our

caregiver have had the same ones. Ask any question and you will get many

responses. There are only two kinds of questions, the ones that get asked

and the ones that don't.

Again, welcome to the group. Every one of us were " new " at one time, but I

think you will be amazed at the number of friends you suddenly have.

Vaughn

Pain is inevitable. Misery is optional.

[Guest guest]

You live in W Knoxville? What a coincidence it that???? ***WE*** live in West

Knoxville!!!!!

There must me an " Brakovich " story in here somewhere!

Peace, and may all be auspicious,

Ohm Ma Ni Pad Me Hum

" May all beings be free from suffering and the causes of suffering

Re: Introduction

Hi ,

I live in W Knoxville and after 12 years of " having MS " , I finally found a

Neuro who knew a belly button from a hole in the ground. I now have PLS and

consider that a giant leap upward. That dx got me off of steroids (read

that as cataracts and liver damage) and immuno-suppressant drugs.

Look at it this way: may die with PLS (when he's an old man), but

he won't die from having it. You will find that some of us have had this

^ & *%$#@ malady for 20 years or more.

Welcome to PLS Friends. You and will find this group to be the most

supportive, informative, knowledgeable, loving, kind, friendly and sharing

group I know of anywhere. We poke fun at ourselves (sometimes each other),

our actions and our " problems " , but we will be sympathetic and uplifting to

each other when the " down " times hit. You don't ever have to like PLS (many

days you will hate it and be very frustrated at it and by it), but you will

learn to live with it.

Feel free to vent your frustrations. Chances are most of us and/or our

caregiver have had the same ones. Ask any question and you will get many

responses. There are only two kinds of questions, the ones that get asked

and the ones that don't.

Again, welcome to the group. Every one of us were " new " at one time, but I

think you will be amazed at the number of friends you suddenly have.

Vaughn

Pain is inevitable. Misery is optional.

[Guest guest]

Hi :

Welcome to the group, this is the place to be. I am 66 years old, live

in New Hampshire. I was in my early 30's when things started to happen.

Took me 2 1/2 years to get a diagnosis. I was one of the lucky ones.

For years my progression has been very slow, and I have been fortunate

enough to have met at least 25 PLSer's in the past few years, and have

learned at this disease strikes many people in different ways, some

slower like myself, and other's get hit hard and fast as you will learn

as you get to know us all better. We all have different approaches to

how to handle having PLS and mine is eliminate as much stress as

possible from your life, don't fight it as it can't be reversed, but can

be controlled if you listen to your body.

You as a caregiver have a big role in how he handles having PLS. Live

life as normal as you can, don't make an invalid out of him. Let him do

the things he can do, regardless if you think you can do it better or

faster (like my dear husband does). If he needs you, be there, but

don't coddle him, if you understand what I am saying. This is not a

life threatening disease, just life changing. Just take it one day at a

time. There is life after a PLS diagnosis.

Good Luck!

Rita

Luv & Hugs!

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

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

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

[Guest guest]

Hi :

Welcome to the group, this is the place to be. I am 66 years old, live

in New Hampshire. I was in my early 30's when things started to happen.

Took me 2 1/2 years to get a diagnosis. I was one of the lucky ones.

For years my progression has been very slow, and I have been fortunate

enough to have met at least 25 PLSer's in the past few years, and have

learned at this disease strikes many people in different ways, some

slower like myself, and other's get hit hard and fast as you will learn

as you get to know us all better. We all have different approaches to

how to handle having PLS and mine is eliminate as much stress as

possible from your life, don't fight it as it can't be reversed, but can

be controlled if you listen to your body.

You as a caregiver have a big role in how he handles having PLS. Live

life as normal as you can, don't make an invalid out of him. Let him do

the things he can do, regardless if you think you can do it better or

faster (like my dear husband does). If he needs you, be there, but

don't coddle him, if you understand what I am saying. This is not a

life threatening disease, just life changing. Just take it one day at a

time. There is life after a PLS diagnosis.

Good Luck!

Rita

Luv & Hugs!

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

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

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

[Guest guest]

Welcome to the group and .

This group has become a lifeline of information and friends in the short

time that I joined which has only been a few months. These people have

provided medical information and moral support for which I am very grateful

and above all the humour you will find here is priceless and is just what

one needs when we are having a bad day.

I too am an only child and am going through a rough time with my Mom who is

hospitalized with severe emphasema and pulmonary disease and I now have to

address the fact that a Nursing Home may be in the near future for her. It

is going to devastate her and be very tough on me so you can bet I will be

drawing strength and support down the road from my PLS-friends.

My thoughts are with you and your husband and am glad you have found the

website. May the support of knowing others care help you through these

difficult times.

Sincerely, Jo (Thunder Bay, Ontario, Canada)

Introduction

> My name is , and my husband has just been diagnosed with PLS after a

long long round of tests and a first diagnosis of ALS. We live in Tennessee,

but we are seeking treatment at the Carolinas ALS institute. Our first visit

was on the 28th of October, when Dr. Rosenfeld gave us the news that

had PLS instead of ALS. We still haven't decided if it's good or bad news,

frankly. But we are going to enroll in just about any study we find, and are

going to try to make the best of things. is 34 and I am 35. We have

no children, though we desperately wanted them. I went through many many

infertility treatments. But now I guess it's a blessing.

>

> Anyway, I just wanted to say hello and hope that I will find some support.

I'm sorely in need of it. My mother has terminal cancer and my father is

slowly dying in a nursing home, and I am an only child. Feeling pretty

isolated, to say the least!

>

> So, it's nice to " meet " you, and I hope to hear from you soon.

>

> Peace, and may all be auspicious,

>

>

>

> Ohm Ma Ni Pad Me Hum

> " May all being be free from suffering and the causes of suffering "

>

>

>

[Guest guest]

Welcome to the group and .

This group has become a lifeline of information and friends in the short

time that I joined which has only been a few months. These people have

provided medical information and moral support for which I am very grateful

and above all the humour you will find here is priceless and is just what

one needs when we are having a bad day.

I too am an only child and am going through a rough time with my Mom who is

hospitalized with severe emphasema and pulmonary disease and I now have to

address the fact that a Nursing Home may be in the near future for her. It

is going to devastate her and be very tough on me so you can bet I will be

drawing strength and support down the road from my PLS-friends.

My thoughts are with you and your husband and am glad you have found the

website. May the support of knowing others care help you through these

difficult times.

Sincerely, Jo (Thunder Bay, Ontario, Canada)

Introduction

> My name is , and my husband has just been diagnosed with PLS after a

long long round of tests and a first diagnosis of ALS. We live in Tennessee,

but we are seeking treatment at the Carolinas ALS institute. Our first visit

was on the 28th of October, when Dr. Rosenfeld gave us the news that

had PLS instead of ALS. We still haven't decided if it's good or bad news,

frankly. But we are going to enroll in just about any study we find, and are

going to try to make the best of things. is 34 and I am 35. We have

no children, though we desperately wanted them. I went through many many

infertility treatments. But now I guess it's a blessing.

>

> Anyway, I just wanted to say hello and hope that I will find some support.

I'm sorely in need of it. My mother has terminal cancer and my father is

slowly dying in a nursing home, and I am an only child. Feeling pretty

isolated, to say the least!

>

> So, it's nice to " meet " you, and I hope to hear from you soon.

>

> Peace, and may all be auspicious,

>

>

>

> Ohm Ma Ni Pad Me Hum

> " May all being be free from suffering and the causes of suffering "

>

>

>