New Member

[Guest guest]

,

Do you know how large your fibroids are and where they are located (on the outer

wall of the uterus, inside the wall, or inside the uterus)? If you have had

fibroids for 4 years and your doctor is now saying you might need a hysterectomy

within two years, I wonder how much they have grown since your initial diagnosis

and whether your doctor explained to you the various options for fibroid

treatment other than hysterectomy--i.e., myomectomy, uterine artery embolization

(UAE), hysteroscopic resection, etc. You have more options for treatment if the

treatment is undertaken before the fibroid(s) get too large.

It is typical for gynecologists to recommend hysterectomy, as that is what they

are trained to do, and they are either not trained in other procedures (such as

UAE, which is performed by interventional radiologists), or less experienced in

the more complicated ones, such as myomectomy. I think it is outrageous that

some gynecologists don't explain all the options to you, but sadly, not all do -

but that is a whole other debate right there.

All of the alternatives are not viable options for every woman. It depends on

size and location of fibroids, other medical issues you might have

(endometriosis, adenomyosis, etc.), whether you wish to maintain your

fertility...there are lots of things to consider. It might be helpful to

explore this group's archives, as there are tons of topics covered there as well

as many women's experiences with all of the options mentioned above, and more.

There are also helpful books you can read, such as Johanna Skilling's " Fibroids,

the Complete Guide to Taking Charge of Your Physical, Emotional, and Sexual

Well-Being " and Carla Dionne's " Sex, Lies and the Truth About Uterine Fibroids. "

You can get a lot of information through this list, and a lot of support. I

suggest that you use it and read all that you can about fibroids and options for

treatment. A hysterectomy was recommended to me, too, but my gyn also told me

he felt I was a candidate for UAE. That is what I chose, and I have been very

happy with the results - complete relief of symptoms, and pain-free periods now

which I never had in my whole life before. A hysterectomy instead of a UAE

would have been extreme " overkill " in my case. I am not against hysterectomies

per se, but I have become appalled at how readily they are recommended and

performed, when less invasive procedures could have been done in many, if not

most, cases.

B.

new member

Hi

I am new to this group and I have uterine fibroids, which I was diagnosed

with in January 1997. I just had my annual checkup last week and my doctor

told me that I would probably have to have a hysterectomy within 2 years,

due to the size of the fibroids. I am thinking it might be a lot sooner than

that, due to the pain the fibroids are causing. I would like to hear from

those who have had a hysterectomy, how much pain was caused by the surgery

(I am really scared of that) how long it took to recover, and any effects

cause afterwards by hysterectomy; physical and psychological.

Thanks,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

,

Do you know how large your fibroids are and where they are located (on the outer

wall of the uterus, inside the wall, or inside the uterus)? If you have had

fibroids for 4 years and your doctor is now saying you might need a hysterectomy

within two years, I wonder how much they have grown since your initial diagnosis

and whether your doctor explained to you the various options for fibroid

treatment other than hysterectomy--i.e., myomectomy, uterine artery embolization

(UAE), hysteroscopic resection, etc. You have more options for treatment if the

treatment is undertaken before the fibroid(s) get too large.

It is typical for gynecologists to recommend hysterectomy, as that is what they

are trained to do, and they are either not trained in other procedures (such as

UAE, which is performed by interventional radiologists), or less experienced in

the more complicated ones, such as myomectomy. I think it is outrageous that

some gynecologists don't explain all the options to you, but sadly, not all do -

but that is a whole other debate right there.

All of the alternatives are not viable options for every woman. It depends on

size and location of fibroids, other medical issues you might have

(endometriosis, adenomyosis, etc.), whether you wish to maintain your

fertility...there are lots of things to consider. It might be helpful to

explore this group's archives, as there are tons of topics covered there as well

as many women's experiences with all of the options mentioned above, and more.

There are also helpful books you can read, such as Johanna Skilling's " Fibroids,

the Complete Guide to Taking Charge of Your Physical, Emotional, and Sexual

Well-Being " and Carla Dionne's " Sex, Lies and the Truth About Uterine Fibroids. "

You can get a lot of information through this list, and a lot of support. I

suggest that you use it and read all that you can about fibroids and options for

treatment. A hysterectomy was recommended to me, too, but my gyn also told me

he felt I was a candidate for UAE. That is what I chose, and I have been very

happy with the results - complete relief of symptoms, and pain-free periods now

which I never had in my whole life before. A hysterectomy instead of a UAE

would have been extreme " overkill " in my case. I am not against hysterectomies

per se, but I have become appalled at how readily they are recommended and

performed, when less invasive procedures could have been done in many, if not

most, cases.

B.

new member

Hi

I am new to this group and I have uterine fibroids, which I was diagnosed

with in January 1997. I just had my annual checkup last week and my doctor

told me that I would probably have to have a hysterectomy within 2 years,

due to the size of the fibroids. I am thinking it might be a lot sooner than

that, due to the pain the fibroids are causing. I would like to hear from

those who have had a hysterectomy, how much pain was caused by the surgery

(I am really scared of that) how long it took to recover, and any effects

cause afterwards by hysterectomy; physical and psychological.

Thanks,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

,

Do you know how large your fibroids are and where they are located (on the outer

wall of the uterus, inside the wall, or inside the uterus)? If you have had

fibroids for 4 years and your doctor is now saying you might need a hysterectomy

within two years, I wonder how much they have grown since your initial diagnosis

and whether your doctor explained to you the various options for fibroid

treatment other than hysterectomy--i.e., myomectomy, uterine artery embolization

(UAE), hysteroscopic resection, etc. You have more options for treatment if the

treatment is undertaken before the fibroid(s) get too large.

It is typical for gynecologists to recommend hysterectomy, as that is what they

are trained to do, and they are either not trained in other procedures (such as

UAE, which is performed by interventional radiologists), or less experienced in

the more complicated ones, such as myomectomy. I think it is outrageous that

some gynecologists don't explain all the options to you, but sadly, not all do -

but that is a whole other debate right there.

All of the alternatives are not viable options for every woman. It depends on

size and location of fibroids, other medical issues you might have

(endometriosis, adenomyosis, etc.), whether you wish to maintain your

fertility...there are lots of things to consider. It might be helpful to

explore this group's archives, as there are tons of topics covered there as well

as many women's experiences with all of the options mentioned above, and more.

There are also helpful books you can read, such as Johanna Skilling's " Fibroids,

the Complete Guide to Taking Charge of Your Physical, Emotional, and Sexual

Well-Being " and Carla Dionne's " Sex, Lies and the Truth About Uterine Fibroids. "

You can get a lot of information through this list, and a lot of support. I

suggest that you use it and read all that you can about fibroids and options for

treatment. A hysterectomy was recommended to me, too, but my gyn also told me

he felt I was a candidate for UAE. That is what I chose, and I have been very

happy with the results - complete relief of symptoms, and pain-free periods now

which I never had in my whole life before. A hysterectomy instead of a UAE

would have been extreme " overkill " in my case. I am not against hysterectomies

per se, but I have become appalled at how readily they are recommended and

performed, when less invasive procedures could have been done in many, if not

most, cases.

B.

new member

Hi

I am new to this group and I have uterine fibroids, which I was diagnosed

with in January 1997. I just had my annual checkup last week and my doctor

told me that I would probably have to have a hysterectomy within 2 years,

due to the size of the fibroids. I am thinking it might be a lot sooner than

that, due to the pain the fibroids are causing. I would like to hear from

those who have had a hysterectomy, how much pain was caused by the surgery

(I am really scared of that) how long it took to recover, and any effects

cause afterwards by hysterectomy; physical and psychological.

Thanks,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Becky, I think you are referring to endometrial ablation, which

destroys the lining of the uterus and helps some bleeding problems,

but is not a cure for fibroids. Uterine Artery Embolization (UAE)

treats the fibroids by cutting off their blood supply, causing them

to shrink and die.

> Hello to a great group of gals,

>

> I've been lurking for a few days. First , I must say that I

have already

> read something that was in my heart but I had not voiced. Taking

my uterus

> will leave me feeling maimed. I was sexually abused as a child and

at 36 I

> am just beginning to reclaim my body. After years of sexual

dysfuntion my

> intimate married life is just starting to get good. I am not

willing to

> allow my body to be insulted again.

>

> After being diagnosed with a few small fibroids (not inside my

uterus)

> and having extremely heavy periods for most of my life-except when

I was on

> BC or pregnant or nursing (duration, cramps and clotting have

increased

> dramatically in the last few years) I was shocked when my young

female GYN

> immediately brought up hysterectomy. We don't even know if the

fibroids are

> causing the heavy bleeding.

>

> So, here I am finding all of your collective wisdom. The www

is

> awesome! Here is my question: Could someone direct me to a

resourse on diet?

> I am wondering if I could control my heavy periods and fibroid

growth by

> eliminating caffeine, etc. ~and~ If my fibroids are not causing

the heavy

> periods, has anyone had success with emolization (sp?) where they

remove the

> endometrium. I do not plan to have any more kids. Thanks in

advance you are

> all so courageous and caring.

>

> Becky

>

>

>

>

>

[Guest guest]

Becky, I think you are referring to endometrial ablation, which

destroys the lining of the uterus and helps some bleeding problems,

but is not a cure for fibroids. Uterine Artery Embolization (UAE)

treats the fibroids by cutting off their blood supply, causing them

to shrink and die.

> Hello to a great group of gals,

>

> I've been lurking for a few days. First , I must say that I

have already

> read something that was in my heart but I had not voiced. Taking

my uterus

> will leave me feeling maimed. I was sexually abused as a child and

at 36 I

> am just beginning to reclaim my body. After years of sexual

dysfuntion my

> intimate married life is just starting to get good. I am not

willing to

> allow my body to be insulted again.

>

> After being diagnosed with a few small fibroids (not inside my

uterus)

> and having extremely heavy periods for most of my life-except when

I was on

> BC or pregnant or nursing (duration, cramps and clotting have

increased

> dramatically in the last few years) I was shocked when my young

female GYN

> immediately brought up hysterectomy. We don't even know if the

fibroids are

> causing the heavy bleeding.

>

> So, here I am finding all of your collective wisdom. The www

is

> awesome! Here is my question: Could someone direct me to a

resourse on diet?

> I am wondering if I could control my heavy periods and fibroid

growth by

> eliminating caffeine, etc. ~and~ If my fibroids are not causing

the heavy

> periods, has anyone had success with emolization (sp?) where they

remove the

> endometrium. I do not plan to have any more kids. Thanks in

advance you are

> all so courageous and caring.

>

> Becky

>

>

>

>

>

[Guest guest]

Becky, I think you are referring to endometrial ablation, which

destroys the lining of the uterus and helps some bleeding problems,

but is not a cure for fibroids. Uterine Artery Embolization (UAE)

treats the fibroids by cutting off their blood supply, causing them

to shrink and die.

> Hello to a great group of gals,

>

> I've been lurking for a few days. First , I must say that I

have already

> read something that was in my heart but I had not voiced. Taking

my uterus

> will leave me feeling maimed. I was sexually abused as a child and

at 36 I

> am just beginning to reclaim my body. After years of sexual

dysfuntion my

> intimate married life is just starting to get good. I am not

willing to

> allow my body to be insulted again.

>

> After being diagnosed with a few small fibroids (not inside my

uterus)

> and having extremely heavy periods for most of my life-except when

I was on

> BC or pregnant or nursing (duration, cramps and clotting have

increased

> dramatically in the last few years) I was shocked when my young

female GYN

> immediately brought up hysterectomy. We don't even know if the

fibroids are

> causing the heavy bleeding.

>

> So, here I am finding all of your collective wisdom. The www

is

> awesome! Here is my question: Could someone direct me to a

resourse on diet?

> I am wondering if I could control my heavy periods and fibroid

growth by

> eliminating caffeine, etc. ~and~ If my fibroids are not causing

the heavy

> periods, has anyone had success with emolization (sp?) where they

remove the

> endometrium. I do not plan to have any more kids. Thanks in

advance you are

> all so courageous and caring.

>

> Becky

>

>

>

>

>

[Guest guest]

Welcome Becky,

Congratulations on overcoming your past. I would be concerned if you have

heavy bleeding and you are certain your fibroids are outside the uterus. The

two books I have found invaluable for the explaination of fibroids and diet

to control them is in Carla Dionne's book, " Sex, Lies, and the Truth About

Uterine Fibroids " and " Fibroids, The Complete Guide to Taking Charge of your

Physical, Emotional and Sexual Well-being " by Johanna Skilling. We are all in

this together.

Robin Dundas

[Guest guest]

Thanks to those of you who have responded. I did mean ablation, not

embolization. I do understand the difference. Do you think that if my

fibroids are small and on the outside of my uterus-I should expect them to

be growing quickly?

Reply-To: uterinefibroids

Date: Fri, 05 Apr 2002 22:54:58 -0500

To: <uterinefibroids >

Subject: New member

Hello to a great group of gals,

I've been lurking for a few days. First , I must say that I have already

read something that was in my heart but I had not voiced. Taking my uterus

will leave me feeling maimed. I was sexually abused as a child and at 36 I

am just beginning to reclaim my body. After years of sexual dysfuntion my

intimate married life is just starting to get good. I am not willing to

allow my body to be insulted again.

After being diagnosed with a few small fibroids (not inside my uterus)

and having extremely heavy periods for most of my life-except when I was on

BC or pregnant or nursing (duration, cramps and clotting have increased

dramatically in the last few years) I was shocked when my young female GYN

immediately brought up hysterectomy. We don't even know if the fibroids are

causing the heavy bleeding.

So, here I am finding all of your collective wisdom. The www is

awesome! Here is my question: Could someone direct me to a resourse on diet?

I am wondering if I could control my heavy periods and fibroid growth by

eliminating caffeine, etc. ~and~ If my fibroids are not causing the heavy

periods, has anyone had success with emolization (sp?) where they remove the

endometrium. I do not plan to have any more kids. Thanks in advance you are

all so courageous and caring.

Becky

[Guest guest]

Thanks to those of you who have responded. I did mean ablation, not

embolization. I do understand the difference. Do you think that if my

fibroids are small and on the outside of my uterus-I should expect them to

be growing quickly?

Reply-To: uterinefibroids

Date: Fri, 05 Apr 2002 22:54:58 -0500

To: <uterinefibroids >

Subject: New member

Hello to a great group of gals,

I've been lurking for a few days. First , I must say that I have already

read something that was in my heart but I had not voiced. Taking my uterus

will leave me feeling maimed. I was sexually abused as a child and at 36 I

am just beginning to reclaim my body. After years of sexual dysfuntion my

intimate married life is just starting to get good. I am not willing to

allow my body to be insulted again.

After being diagnosed with a few small fibroids (not inside my uterus)

and having extremely heavy periods for most of my life-except when I was on

BC or pregnant or nursing (duration, cramps and clotting have increased

dramatically in the last few years) I was shocked when my young female GYN

immediately brought up hysterectomy. We don't even know if the fibroids are

causing the heavy bleeding.

So, here I am finding all of your collective wisdom. The www is

awesome! Here is my question: Could someone direct me to a resourse on diet?

I am wondering if I could control my heavy periods and fibroid growth by

eliminating caffeine, etc. ~and~ If my fibroids are not causing the heavy

periods, has anyone had success with emolization (sp?) where they remove the

endometrium. I do not plan to have any more kids. Thanks in advance you are

all so courageous and caring.

Becky

[Guest guest]

Jane,

Since you are in all probability a 'Gator fan, I suggest as a permanent

remedy a .38 cal. taken internally.

Seriously, I have nothing to offer. I've had PLS for 15 years, but other

than an occasional leg cramp (from stretching) I have had no pain. But

you've come to the right place. I'm sure you will realize that when you

start getting responses. PLS FRIENDS is not just a catchy name. They are

the most friendly, unselfish, helpful and knowledgeable (with one exception)

I have ever " known " . I say that even though I have met only a few.

Hang in there. There's better times a comin'.

Vaughn in TN (Big Orange Country)

[Guest guest]

Hi Jane,

Welcome to our group. A bunch of us are going to be in San Diego this weekend

for the 3rd Annual PLS Connection, this one is called the California Connection.

There will be 50 of us (well, that number includes spouses/friends) as well as

the top researchers on PLS, Dr. Armon, Dr. Fink, and Dr. Siddque. Some are

already " on the road " or " in the air " so you might not hear from them until

after they get back home. Check out the two website after my name for more

info. There is a page that you might be interested at the PLS Awareness site,

it has data from a lot of other PLSers.

http://www.geocities.com/mdmfoo/Data.html

The actual truth about life threatening vs life-style threatening seems to

depend on several things. The age of onset (if PLS has an average span of 20

years, most will die of other causes first), the rate of progression, and the

ratio of Upper to Lower motor neuron involvement or variant of the disease.

But for a very small number of PLSers, the issue of mortality is not anything to

worry about.

I worry more about not being able to do things I want to do, rather than being

worried about not being around to do them!

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

Hi Don and others,

Until I joined this list I had no idea that my dry cough was related to my

PLS. Now I see it as a symptom so often that it must be related.

My cough is also worse when I am talking on the phone. I sure would like to

know what causes it. Like you Don I am not aware of any effect on my voice

or swallowing.

My legs are my main problem and they have gone downhill very rapidly.

Jane

[Guest guest]

Hi Don and others,

Until I joined this list I had no idea that my dry cough was related to my

PLS. Now I see it as a symptom so often that it must be related.

My cough is also worse when I am talking on the phone. I sure would like to

know what causes it. Like you Don I am not aware of any effect on my voice

or swallowing.

My legs are my main problem and they have gone downhill very rapidly.

Jane

[Guest guest]

Hi Don and others,

Until I joined this list I had no idea that my dry cough was related to my

PLS. Now I see it as a symptom so often that it must be related.

My cough is also worse when I am talking on the phone. I sure would like to

know what causes it. Like you Don I am not aware of any effect on my voice

or swallowing.

My legs are my main problem and they have gone downhill very rapidly.

Jane

[Guest guest]

Hi Vaughn,

Though I am a Gator fan ( but not a fanatic since I have only lived here for

6 years) I'll be rooting for the Vols tomorrow.

I also root for Cal and USC (not the one in South Carolina) no matter who

they play. And when they play each other I can't lose.

Ciao!

Jane in Gator land

[Guest guest]

Hi Vaughn,

Though I am a Gator fan ( but not a fanatic since I have only lived here for

6 years) I'll be rooting for the Vols tomorrow.

I also root for Cal and USC (not the one in South Carolina) no matter who

they play. And when they play each other I can't lose.

Ciao!

Jane in Gator land

[Guest guest]

Hi Vaughn,

Though I am a Gator fan ( but not a fanatic since I have only lived here for

6 years) I'll be rooting for the Vols tomorrow.

I also root for Cal and USC (not the one in South Carolina) no matter who

they play. And when they play each other I can't lose.

Ciao!

Jane in Gator land

[Guest guest]

Hi Don,

Welcome to the group! I was also diagnosed in 1999, in September.

I am just amazed at your schedule and stamina. Don't you have problems with

fatigue? That's my worst symptom. I also have quite a bit of pain. Pain in my

feet, legs, and hips. I also have some osteoarthritis, but my neuro suggested

the pain is from " the way you walk " . I still walk mostly unaided.

But, I have found that I cannot tolerate working full-time. I worked part-time

until June, then resigned a very stressful, and discriminating job. (Yes, I

have filed a claim with the Department of Human Rights and the EEOC). From

September 1, I have been working full-time about 40 miles away for a temp. job

placement company. The job has been sedentary, but with the 50 minute drive each

way, I am putting in 11 hour days. The fatigue has become almost over whelming

at times.

Stick around this fine group. They're great. I have also met several members,

and can't believe the instant connection. I don't know what I would have done

without this group the last 3 years.

Take care, and keep the faith,

Laurel

54 y/o female from Iowa

New member

Hello everyone,

My name is Don Penny and I'm new to the group. I've been listening in a

couple of weeks but this is my first posting. My wife Joanne and I attended

the wonderful Autumn in Carolina meeting in October and met some of you

there. I was diagnosed in June of 1999 and have progressed slowly, steadily

to a four-wheeled walker, which I could not get along without. For longer

excursions I also have a scooter. I teach in a university setting and have

maintained a full teaching load plus all normal ancillary duties so far. PLS

has mainly affected my legs, though I can feel symptoms in the trunk and

arms as well. My voice and swallowing have not been affected--I think.

I have noticed several postings lately related to coughing. I have had a

nagging, persistent cough for going on 2 years. Vaughn's description sounds

much like mine (except I've never been a smoker)--dry, unproductive cough

associated with talking. As soon as I begin to talk, here comes the

cough--especially on the phone. In my line of work, this has been quite

annoying--to me but especially to my students! I know they get tired of

hearing it, and I constantly apologize for it. The saving factor--and the

most perplexing aspect--is that (usually) after I've begun talking for a

while the coughing subsides.

I've been seeing an ENT for over a year. He saw the kind of inflammation

around my vocal cords normally associated with acid reflux and has been

treating me with Prilosec, Nexium, etc. to reduce the acid. Initially this

seemed to help. The cough cleared up for a while. But then it returned--with

no change in treatment--and is now just as bad as ever. I've tried changes

in diet, elevating the head of the bed, etc. with no success. My ENT no

longer sees the inflammation, but the coughing is just the same.

I'm beginning to wonder if the coughing is PLS-related. Vaughn, did your

coughing begin before or after you started to notice problems with your

voice and/or swallowing? Could the coughing be an early sign of PLS moving

into that region? I take baclofen and zanaflex for spasticity. Could they be

a factor?

Any thoughts out there will be appreciated.

Glad to be in the group,

Don Penny

[Guest guest]

Hi Don,

Welcome to the group! I was also diagnosed in 1999, in September.

I am just amazed at your schedule and stamina. Don't you have problems with

fatigue? That's my worst symptom. I also have quite a bit of pain. Pain in my

feet, legs, and hips. I also have some osteoarthritis, but my neuro suggested

the pain is from " the way you walk " . I still walk mostly unaided.

But, I have found that I cannot tolerate working full-time. I worked part-time

until June, then resigned a very stressful, and discriminating job. (Yes, I

have filed a claim with the Department of Human Rights and the EEOC). From

September 1, I have been working full-time about 40 miles away for a temp. job

placement company. The job has been sedentary, but with the 50 minute drive each

way, I am putting in 11 hour days. The fatigue has become almost over whelming

at times.

Stick around this fine group. They're great. I have also met several members,

and can't believe the instant connection. I don't know what I would have done

without this group the last 3 years.

Take care, and keep the faith,

Laurel

54 y/o female from Iowa

New member

Hello everyone,

My name is Don Penny and I'm new to the group. I've been listening in a

couple of weeks but this is my first posting. My wife Joanne and I attended

the wonderful Autumn in Carolina meeting in October and met some of you

there. I was diagnosed in June of 1999 and have progressed slowly, steadily

to a four-wheeled walker, which I could not get along without. For longer

excursions I also have a scooter. I teach in a university setting and have

maintained a full teaching load plus all normal ancillary duties so far. PLS

has mainly affected my legs, though I can feel symptoms in the trunk and

arms as well. My voice and swallowing have not been affected--I think.

I have noticed several postings lately related to coughing. I have had a

nagging, persistent cough for going on 2 years. Vaughn's description sounds

much like mine (except I've never been a smoker)--dry, unproductive cough

associated with talking. As soon as I begin to talk, here comes the

cough--especially on the phone. In my line of work, this has been quite

annoying--to me but especially to my students! I know they get tired of

hearing it, and I constantly apologize for it. The saving factor--and the

most perplexing aspect--is that (usually) after I've begun talking for a

while the coughing subsides.

I've been seeing an ENT for over a year. He saw the kind of inflammation

around my vocal cords normally associated with acid reflux and has been

treating me with Prilosec, Nexium, etc. to reduce the acid. Initially this

seemed to help. The cough cleared up for a while. But then it returned--with

no change in treatment--and is now just as bad as ever. I've tried changes

in diet, elevating the head of the bed, etc. with no success. My ENT no

longer sees the inflammation, but the coughing is just the same.

I'm beginning to wonder if the coughing is PLS-related. Vaughn, did your

coughing begin before or after you started to notice problems with your

voice and/or swallowing? Could the coughing be an early sign of PLS moving

into that region? I take baclofen and zanaflex for spasticity. Could they be

a factor?

Any thoughts out there will be appreciated.

Glad to be in the group,

Don Penny

[Guest guest]

Hi Don,

Welcome to the group! I was also diagnosed in 1999, in September.

I am just amazed at your schedule and stamina. Don't you have problems with

fatigue? That's my worst symptom. I also have quite a bit of pain. Pain in my

feet, legs, and hips. I also have some osteoarthritis, but my neuro suggested

the pain is from " the way you walk " . I still walk mostly unaided.

But, I have found that I cannot tolerate working full-time. I worked part-time

until June, then resigned a very stressful, and discriminating job. (Yes, I

have filed a claim with the Department of Human Rights and the EEOC). From

September 1, I have been working full-time about 40 miles away for a temp. job

placement company. The job has been sedentary, but with the 50 minute drive each

way, I am putting in 11 hour days. The fatigue has become almost over whelming

at times.

Stick around this fine group. They're great. I have also met several members,

and can't believe the instant connection. I don't know what I would have done

without this group the last 3 years.

Take care, and keep the faith,

Laurel

54 y/o female from Iowa

New member

Hello everyone,

My name is Don Penny and I'm new to the group. I've been listening in a

couple of weeks but this is my first posting. My wife Joanne and I attended

the wonderful Autumn in Carolina meeting in October and met some of you

there. I was diagnosed in June of 1999 and have progressed slowly, steadily

to a four-wheeled walker, which I could not get along without. For longer

excursions I also have a scooter. I teach in a university setting and have

maintained a full teaching load plus all normal ancillary duties so far. PLS

has mainly affected my legs, though I can feel symptoms in the trunk and

arms as well. My voice and swallowing have not been affected--I think.

I have noticed several postings lately related to coughing. I have had a

nagging, persistent cough for going on 2 years. Vaughn's description sounds

much like mine (except I've never been a smoker)--dry, unproductive cough

associated with talking. As soon as I begin to talk, here comes the

cough--especially on the phone. In my line of work, this has been quite

annoying--to me but especially to my students! I know they get tired of

hearing it, and I constantly apologize for it. The saving factor--and the

most perplexing aspect--is that (usually) after I've begun talking for a

while the coughing subsides.

I've been seeing an ENT for over a year. He saw the kind of inflammation

around my vocal cords normally associated with acid reflux and has been

treating me with Prilosec, Nexium, etc. to reduce the acid. Initially this

seemed to help. The cough cleared up for a while. But then it returned--with

no change in treatment--and is now just as bad as ever. I've tried changes

in diet, elevating the head of the bed, etc. with no success. My ENT no

longer sees the inflammation, but the coughing is just the same.

I'm beginning to wonder if the coughing is PLS-related. Vaughn, did your

coughing begin before or after you started to notice problems with your

voice and/or swallowing? Could the coughing be an early sign of PLS moving

into that region? I take baclofen and zanaflex for spasticity. Could they be

a factor?

Any thoughts out there will be appreciated.

Glad to be in the group,

Don Penny

[Guest guest]

I had that dry cough from speaking about 2 years ago. It has tapered off now,

but sometimes reacts that way. I never smoked, but my throat has always been a

" weak " spot for me.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

I had that dry cough from speaking about 2 years ago. It has tapered off now,

but sometimes reacts that way. I never smoked, but my throat has always been a

" weak " spot for me.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

I root for ANYONE playing Miami. Even though I went to FSU!

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: New member

Hi Vaughn,

Though I am a Gator fan ( but not a fanatic since I have only lived here for

6 years) I'll be rooting for the Vols tomorrow.

I also root for Cal and USC (not the one in South Carolina) no matter who

they play. And when they play each other I can't lose.

Ciao!

Jane in Gator land

[Guest guest]

I root for ANYONE playing Miami. Even though I went to FSU!

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: New member

Hi Vaughn,

Though I am a Gator fan ( but not a fanatic since I have only lived here for

6 years) I'll be rooting for the Vols tomorrow.

I also root for Cal and USC (not the one in South Carolina) no matter who

they play. And when they play each other I can't lose.

Ciao!

Jane in Gator land

[Guest guest]

Hi Don:

Boy, so many light bulbs begin going off in my head the more I read from

this group. I have the same problem many times when I try talking on the

phone but just thought it was sinuses or something like that. One other

thing I have noticed is that sometimes I am constantly swallowing as it

feels there is something in the back of my throat. I too, would be

interested in hearing any comments relating to same.

Welcome to the group Don and Joanne. Will look forward to hearing from you

again.

Jo!

New member

> Hello everyone,

>

> My name is Don Penny and I'm new to the group. I've been listening in a

> couple of weeks but this is my first posting. My wife Joanne and I

attended

> the wonderful Autumn in Carolina meeting in October and met some of you

> there. I was diagnosed in June of 1999 and have progressed slowly,

steadily

> to a four-wheeled walker, which I could not get along without. For longer

> excursions I also have a scooter. I teach in a university setting and have

> maintained a full teaching load plus all normal ancillary duties so far.

PLS

> has mainly affected my legs, though I can feel symptoms in the trunk and

> arms as well. My voice and swallowing have not been affected--I think.

>

> I have noticed several postings lately related to coughing. I have had a

> nagging, persistent cough for going on 2 years. Vaughn's description

sounds

> much like mine (except I've never been a smoker)--dry, unproductive cough

> associated with talking. As soon as I begin to talk, here comes the

> cough--especially on the phone. In my line of work, this has been quite

> annoying--to me but especially to my students! I know they get tired of

> hearing it, and I constantly apologize for it. The saving factor--and the

> most perplexing aspect--is that (usually) after I've begun talking for a

> while the coughing subsides.

>

> I've been seeing an ENT for over a year. He saw the kind of inflammation

> around my vocal cords normally associated with acid reflux and has been

> treating me with Prilosec, Nexium, etc. to reduce the acid. Initially this

> seemed to help. The cough cleared up for a while. But then it

returned--with

> no change in treatment--and is now just as bad as ever. I've tried changes

> in diet, elevating the head of the bed, etc. with no success. My ENT no

> longer sees the inflammation, but the coughing is just the same.

>

> I'm beginning to wonder if the coughing is PLS-related. Vaughn, did your

> coughing begin before or after you started to notice problems with your

> voice and/or swallowing? Could the coughing be an early sign of PLS moving

> into that region? I take baclofen and zanaflex for spasticity. Could they

be

> a factor?

>

> Any thoughts out there will be appreciated.

>

> Glad to be in the group,

>

> Don Penny

>

>

>