New To Group

[Guest guest]

,

Geeze you have had it rough! I'm just so sorry! I know how hard it must be

with out your husband - personally I think all men are jerks!

My sister is also very ill with cancer, so I have an idea how that must be

for you.

The Lupron shot sucks to put it nicely, but it's beeter in the longrun to

have had it. From what I understand you CAN take BCPs or some other form of

low dose hormones to help with the side effects odf the shot.

I wish there was something I could say or do to make things better, but I can

offer an ear to listen anytime! You can reach me at ktrb9 on AOL or YAHOO

instant messanger and you should have my e-mail from this letter. Pelase

don't hesitate to wrtite! I live in CT so atleast were somewhat close!

All My Best,

[Guest guest]

, please consider other options before hysterectomy: UAE, or myomectomy

to remove the fibroids but leave the uterus, for example. If you are

considering hysterectomy based on your doctor's recommendation, ask WHY he

suggests that, and ask him about myomectomy to see what he says. If he is

opposed to it, get a second opinion, and look for a doctor who does

myomectomies regularly. Maybe your doctor doesn't do them because he can't,

so he automatically suggests hysterectomy--that's what happened to me with a

doctor I really do like. I was lucky in that he understood and respected my

feelings, and referred me to another doctor who does do them. And UAE's

aren't done by gynecologists, so they have no incentive, so to speak, in

suggesting them. I don't plan to have more children, either, and I am 46,

but I STILL don't want to lose my uterus. Sounds like you have had a rough

time. I hope it gets better for you. But don't use that as a reason to

jump into another big decision. Do your research, and give yourself enough

time to decide what feels right for you.

My doctor offered Lupron if I wanted it, and I was very undecided at first.

I don't have any experience with it, but others on the list do, and I'm sure

they will respond to your questions. I finally decided to pass on it for

fear of the side-effects, and because part of my reasoning for wanting a myo

instead of hysterectomy was to avoid the possibility of hormone replacement

therapy. Seemed silly to go on hormones even for 3 months when I really

wanted to avoid them altogether. I'm basically pretty happy, and I didn't

want my mood messed with! Nevermind the thought of night sweats, headaches,

and whatever else can go along with Lupron. You need to decide what YOU

want, though, and what is right for me might not be right for you. Good

luck to you, and I hope it all works out for you.

Dorie

New to Group

> Hello Everyone -

>

> I thought I would introduce myself. My name is . I live in western

NY. I

> was diagnosed with a uterine fibroid about 3 or 4 years ago, and since

that

> time have only kept an eye on it with US once a year. Last year, my GYN

told

> me it was the size of a 12 week pregnancy - but since it was not bleeding,

> and I wasn't in pain, we still didn't have to do anything.

>

> This past week, my yearly US reavealed some growth and some blocking of

the

> ureter on the right size causing back up into the kidney. So.......it's

now

> time to have this thing out.

>

> I am 42 (almost 43) - am done having children - so I am seriously

considering

> having my uterus out. For some reason, the embolization route - even

though

> it is a shorter recovery - does not sound appealing to me. I guess I need

to

> talk to a few Drs and get opinions.

>

> My GYN said something over the phone about Lupron to shrink the fibroid

> before surgery. From what I've read about this drug, and from first hand

> stories I've heard from friends, this worries me more than the surgery

> itself. I guess my first question is about this drug. If there are those

on

> the list who have taken it - would you mind sharing what your experience

has

> been with it? I take a low-dose BC pill for migraine headaches - and I am

> assuming that I will have to stop taking those if I go on Lupron. But that

is

> just my own reasoning - not anything my Dr. has said.

>

> Lastly - I'll just have to say when it rains, it poors. In the last year,

> I've been through separation from my husband of 22 years - the divorce is

in

> process, which led to bankruptcy and losing our house. Had to go back to

work

> full-time - then got laid off from that job a month ago, and my dear

sister

> in law is literally in her last days of cancer. Thankfully I am starting a

> new job tomorrow that has excellent health benefits. But disability

doesn't

> start until 6 months from now. So this all plays into the picture.

> arghhh.....

>

> Glad to find a place where maybe others understand =)

>

>

>

>

[Guest guest]

Hi Deanna,

I think I may be looking down the same barrel of the gun you were! I had a

myo in early 98' and am starting to show signs AGAIN of another fibroid.

Hopefully I'll get to this one before it gets too big!

I can't say about having 2 myo's and still geting pregnant, but I can say

that I have had 3 c-sections and a myo and have 3 beautiful children, so

there's probably hope for you! It went c-section, myo and then 2 more

c-sections with 2 D & C's in between. (1 miscarriage resulting in 2 D & C's -

they didn't get all of the fetus the first time can you believe that?!)

Good Luck,

[Guest guest]

In a message dated 4/1/02 1:28:17 PM Pacific Standard Time,

havencroft2002@... writes:

> There is one additional concern. My fibroid has replaced most of my

> normal uterine tissue.

What do you mean - your fibroid has replaced most of your normal

uterine tissue? Do you mean that it is so big that it fills your entire

uterus?

Cheryl

[Guest guest]

In a message dated 4/1/02 1:28:17 PM Pacific Standard Time,

havencroft2002@... writes:

> There is one additional concern. My fibroid has replaced most of my

> normal uterine tissue.

What do you mean - your fibroid has replaced most of your normal

uterine tissue? Do you mean that it is so big that it fills your entire

uterus?

Cheryl

[Guest guest]

In a message dated 4/1/02 1:28:17 PM Pacific Standard Time,

havencroft2002@... writes:

> There is one additional concern. My fibroid has replaced most of my

> normal uterine tissue.

What do you mean - your fibroid has replaced most of your normal

uterine tissue? Do you mean that it is so big that it fills your entire

uterus?

Cheryl

[Guest guest]

Cheryl,

Thanks for your question. I was a bit vague about that

in my post. I'm not sure if I can explain this clearly

but I will try. My fibroid is intramural and

encompasses all of the top and front portion of my

uterus.

Instead of the fibroid pushing and stretching the

regular uterine tissue around it as it grows within

the wall of the uterus, it appears as though the

fibroid has taken the place of the regular uterine

tissue. So, if the surgeon were to be able to remove

the fibroid there would be little or no normal tissue

left to repair my uterus. If there was enough to close

the void caused by the fibroid there would be a

significat risk of uterine rupture if I were to

conceive.

The radiologist's report said that the fibroid had

obliterated my endometrial canal. I saw the images and

where there should be a comfy space for a fetus there

is nothing but a thin line. The only portion of my

uterus that seems to be intact is the back wall.

Although, it has also been stretched somewhat out of

shape.

I'm not sure if I answered your question completely.

I'm sure I could have found a much simpler way to say

the same thing. My brain is just not cooperating

today.

Thanks again for your inquiry.

--- SiCanto@... wrote:

> In a message dated 4/1/02 1:28:17 PM Pacific

> Standard Time,

> havencroft2002@... writes:

>

>

> > There is one additional concern. My fibroid has

> replaced most of my

> > normal uterine tissue.

>

> What do you mean - your fibroid has replaced most of

> your normal

> uterine tissue? Do you mean that it is so big that

> it fills your entire

> uterus?

> Cheryl

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

What's an HSG, people?

Vivienne

new to group

> Hello group,

>

> I have recently been diagnosed with a uterine fibroid due to having two

> miscarriages from November to February. I had an HSG and an ultrasound

> confirming the fibroid. I am scheduled to have a hysteroscopy on May 2nd

to

> remove the fibroid. I am hoping that the removal of it will enable me to

> carry a baby to term. Has anyone in this group had multiple miscarriages

due

> to fibroids and still gone on to have any children? My husband and I

would

> like to have at least one child. My gynacologist says that removing the

> fibroid should boost my chances of carrying a baby to term. Well, I guess

> that is all for my introduction. Thanks

>

> Dana

>

>

>

>

[Guest guest]

An HSG is a test where they place dye in your uterus and through your

fallopian tubes to test for blockage and to find abnormalities. They take

x-rays of your uterus and tubes while the dye is in there. It is quit

painful, but effective.

Dana

[Guest guest]

An HSG is a test where they place dye in your uterus and through your

fallopian tubes to test for blockage and to find abnormalities. They take

x-rays of your uterus and tubes while the dye is in there. It is quit

painful, but effective.

Dana

[Guest guest]

An HSG is a test where they place dye in your uterus and through your

fallopian tubes to test for blockage and to find abnormalities. They take

x-rays of your uterus and tubes while the dye is in there. It is quit

painful, but effective.

Dana

[Guest guest]

Hi... I am 4 months post embo, and started a light flow about 31/2 weeks

ago, which has been light but continual. All the doc says is come back

for endometrial biopsy when you stop bleeding. He also does'nt seem to

have a clue what's going on. I don't have any pain though. Best of

luch to you! DIane

merryl102000 wrote:

>

> I would be interested in knowing if any other women have had the same

> problem post-embolization that I am having. My doctor has no idea what

> to tell me as she has had few patients who have had this procedure.

> I had the embolization done Feb 5. Starting about 4 days later and

> still continuing I have heavy to mild cramping on practically a daily

> basis, as well as a bloody discharge which ranges from light to heavy.

> I have been taking Motrin for the pain. My doctor did a hysteroscopy 7

> weeks post-embolization and she didn't see anything unusual, and she

> says the fibroid is still there. I know there was shrinkage, I don't

> know how much yet. All I know is that I can wear my clothes again. I

> am 51 years old and the fibroid was the size of a large grapefruit. I

> am still having periods, and they are lighter now but last longer. I

> actually can't tell how long they are lasting because I always have a

> bloody discharge. I cannot find any description of these kind of side

> affects in anything that I have read about embolization. I am not

> comfortable with taking pain killers on a daily basis, but I have no

> choice as I am very uncomfortable if I don't.

>

>

>

[Guest guest]

Hi... I am 4 months post embo, and started a light flow about 31/2 weeks

ago, which has been light but continual. All the doc says is come back

for endometrial biopsy when you stop bleeding. He also does'nt seem to

have a clue what's going on. I don't have any pain though. Best of

luch to you! DIane

merryl102000 wrote:

>

> I would be interested in knowing if any other women have had the same

> problem post-embolization that I am having. My doctor has no idea what

> to tell me as she has had few patients who have had this procedure.

> I had the embolization done Feb 5. Starting about 4 days later and

> still continuing I have heavy to mild cramping on practically a daily

> basis, as well as a bloody discharge which ranges from light to heavy.

> I have been taking Motrin for the pain. My doctor did a hysteroscopy 7

> weeks post-embolization and she didn't see anything unusual, and she

> says the fibroid is still there. I know there was shrinkage, I don't

> know how much yet. All I know is that I can wear my clothes again. I

> am 51 years old and the fibroid was the size of a large grapefruit. I

> am still having periods, and they are lighter now but last longer. I

> actually can't tell how long they are lasting because I always have a

> bloody discharge. I cannot find any description of these kind of side

> affects in anything that I have read about embolization. I am not

> comfortable with taking pain killers on a daily basis, but I have no

> choice as I am very uncomfortable if I don't.

>

>

>

[Guest guest]

Merry ... I had the long-term abdominal cramping after UAE; it gradually

resolved over 4 or 5 months. I did not have significant discharge - though I

don't think that the discharge is very unusual. You do need to be monitored to

be sure you don't have infection ( and get antibiotics and possibly D & C if you

do have infection). I suggest your doctor consult another doctor who has had

many UAE patients and can advise.

[Guest guest]

Merry ... I had the long-term abdominal cramping after UAE; it gradually

resolved over 4 or 5 months. I did not have significant discharge - though I

don't think that the discharge is very unusual. You do need to be monitored to

be sure you don't have infection ( and get antibiotics and possibly D & C if you

do have infection). I suggest your doctor consult another doctor who has had

many UAE patients and can advise.

[Guest guest]

Merry ... I had the long-term abdominal cramping after UAE; it gradually

resolved over 4 or 5 months. I did not have significant discharge - though I

don't think that the discharge is very unusual. You do need to be monitored to

be sure you don't have infection ( and get antibiotics and possibly D & C if you

do have infection). I suggest your doctor consult another doctor who has had

many UAE patients and can advise.

[Guest guest]

Joyce,

Welcome to PLS-Friends. I, too, hope you don't have it. I must say that I

have never heard that PLS is 5% familia; I've always been under the

impression that it was sporadic. Your family history sounds more like HSP

(Hereditary Spastic Paraplegia) but, who am I to disagree with your doctor.

PLS and HSP have joined " groups " to create the Spastic Paraplegia Foundation

(SPF). If I may, I'm listing some sites that you may want to read--one

compares PLS and HSP on http://www.sp-foundation.org. We seem to be getting

more and more new people from Canada so no doubt you'll hear from them.

Reyerse started the PLS website and he is Canadian. His sites are

among those listed below. I'm taking the liberty of forwarding your e-mail

to the HSP Discussion Group also in case some of them could also comment.

(Actually, I'll paste it at the bottom so it doesn't get lost even though it

will make a very long e-mail.)

Through our PLS Education Fund at NORD (National Organization of Rare

Disorders), a PLS Booklet entitled, " Physicians Guide to Primary Lateral

Sclerosis " has just been printed and NORD is sending this booklet to

approximately 14,000 neurologists but you may order a copy, free of charge,

directly from NORD from Dunkle at mdunkle@...

Again, welcome, and the websites are listed below. Hope you will find them

helpful.

Gentner

Fremont, CA

PLS Communications

Liaison for SPF

(PLS website) http://www.geocities.com/freyerse/index.html

(PLS database) http://www.geocities.com/freyerse/plsdb.html

(PLS awareness) www.geocities.com/mdmfoo/pls.html

http://als-pls.org/

(Spastic Parapledgia Foundation) http://www.sp-foundation.org

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

Subj: New to group

Date: 10/8/2002 8:25:06 PM Pacific Daylight Time

From: jhmcll@... (Joyce McAllister)

Reply-to: PLS-FRIENDS

To: PLS-FRIENDS

Hello everyone, I have joined to find out as much info as I can in

PLS!

I don't have it, or at least don't think I do!

My father though did have it and was diagnosed 20 years ago! It take

a few years before they found out what it truly was, but they did!For

those years we graudally seen his falls become more frequent and at

times looking like Rocky racoon, with his black eyes, and we said

this in a loving way!About 6 years ago they discovered my uncle,

dad's brother also has PLS. His falls gave him two broken hips and

later hip replacements and know uses a walker and soon a wheel chair.

This uncle is a twin, and needless to say, the question my uncle

has, will he be a candiadate for PLS as well? Can anyone tell me this?

In PLS I understand that 5% is familial! But does this also include

the children of those with PLS.

For myself, I have fibromyalgia, and I have a lot of body aches and

pains, and the cold weather makes it worse.

But, lately, I have notice different feelings in the stiffness of my

legs and it is also in my feet, my hands are becoming sore and weak

and achyand I can feel it travel up the arm. Now fibro does this as

well, but because dad and my uncle started out feeling this things as

well, I wonder what my chances are? Plus I have a sister wondering

the same thing about herslef, and she says she is just getting

clummsy!

We have been told that it isn't likely that we will get it, but there

seems to be some uncertainty to this as our family arleady has two

with PLS and possibly ALS!

Are we just being to paranoid?

Any help would be wonderful.

My father had one of the leading neuro doctors in the country and we

adore him, it is Dr. Strong out of London, Ontario! It has been an

honour to have him with dad and with my uncle, which by the way

drives 6 hours just for an appointment!

I hope to learn much here on PLS and feel I have come to the right

place for it!

Thanks for your time!

Gentle hugs and kisses!!

Joyce

[Guest guest]

<A HREF= " http://www.geocities.com/freyerse/index.html " >PLS Home Page</A>, <A

HREF= " http://geocities.com/mdmfoo/pls.html " >PLS Thomson infor</A>, <A

HREF= " http://sp-foundation.org/hspl.htm " >HSP-L Discussion List and

Online Support Group</A>, <A HREF= " http://sp-foundation.org/index.shtml " >SPF -

Home Page</A>, Joyce, as far as I know PLS is not

hereditary at least there is none in my family. Above I have listed several

web sites two are PLS and the other are HSP that is Hereditary Spastic

Paraplegia which is hereditary this might be what your family has. Hope I

have helped you. Ask any questions you have this group is full of wonderful

people who have much knowledge each of us are in different stages of PLS some

have had this for 20 years others only a few.

Flora Brand

St. sburg FL.

[Guest guest]

Welcome to the PLS group. I have found this site wonderful, funny,

and very helpful. I was dx. 6-2002, so I'm new at this, but it the

best place I've found for information. Best wishes to you family

and let me know if I can help.

Donna

> Hello everyone, I have joined to find out as much info as I can in

> PLS!

> I don't have it, or at least don't think I do!

> My father though did have it and was diagnosed 20 years ago! It

take

> a few years before they found out what it truly was, but they did!

For

> those years we graudally seen his falls become more frequent and

at

> times looking like Rocky racoon, with his black eyes, and we said

> this in a loving way!About 6 years ago they discovered my uncle,

> dad's brother also has PLS. His falls gave him two broken hips and

> later hip replacements and know uses a walker and soon a wheel

chair.

> This uncle is a twin, and needless to say, the question my uncle

> has, will he be a candiadate for PLS as well? Can anyone tell me

this?

> In PLS I understand that 5% is familial! But does this also

include

> the children of those with PLS.

> For myself, I have fibromyalgia, and I have a lot of body aches

and

> pains, and the cold weather makes it worse.

> But, lately, I have notice different feelings in the stiffness of

my

> legs and it is also in my feet, my hands are becoming sore and

weak

> and achyand I can feel it travel up the arm. Now fibro does this

as

> well, but because dad and my uncle started out feeling this things

as

> well, I wonder what my chances are? Plus I have a sister wondering

> the same thing about herslef, and she says she is just getting

> clummsy!

> We have been told that it isn't likely that we will get it, but

there

> seems to be some uncertainty to this as our family arleady has two

> with PLS and possibly ALS!

> Are we just being to paranoid?

> Any help would be wonderful.

> My father had one of the leading neuro doctors in the country and

we

> adore him, it is Dr. Strong out of London, Ontario! It has been an

> honour to have him with dad and with my uncle, which by the way

> drives 6 hours just for an appointment!

> I hope to learn much here on PLS and feel I have come to the right

> place for it!

> Thanks for your time!

>

> Gentle hugs and kisses!!

> Joyce

[Guest guest]

Welcome to the PLS group. I have found this site wonderful, funny,

and very helpful. I was dx. 6-2002, so I'm new at this, but it the

best place I've found for information. Best wishes to you family

and let me know if I can help.

Donna

> Hello everyone, I have joined to find out as much info as I can in

> PLS!

> I don't have it, or at least don't think I do!

> My father though did have it and was diagnosed 20 years ago! It

take

> a few years before they found out what it truly was, but they did!

For

> those years we graudally seen his falls become more frequent and

at

> times looking like Rocky racoon, with his black eyes, and we said

> this in a loving way!About 6 years ago they discovered my uncle,

> dad's brother also has PLS. His falls gave him two broken hips and

> later hip replacements and know uses a walker and soon a wheel

chair.

> This uncle is a twin, and needless to say, the question my uncle

> has, will he be a candiadate for PLS as well? Can anyone tell me

this?

> In PLS I understand that 5% is familial! But does this also

include

> the children of those with PLS.

> For myself, I have fibromyalgia, and I have a lot of body aches

and

> pains, and the cold weather makes it worse.

> But, lately, I have notice different feelings in the stiffness of

my

> legs and it is also in my feet, my hands are becoming sore and

weak

> and achyand I can feel it travel up the arm. Now fibro does this

as

> well, but because dad and my uncle started out feeling this things

as

> well, I wonder what my chances are? Plus I have a sister wondering

> the same thing about herslef, and she says she is just getting

> clummsy!

> We have been told that it isn't likely that we will get it, but

there

> seems to be some uncertainty to this as our family arleady has two

> with PLS and possibly ALS!

> Are we just being to paranoid?

> Any help would be wonderful.

> My father had one of the leading neuro doctors in the country and

we

> adore him, it is Dr. Strong out of London, Ontario! It has been an

> honour to have him with dad and with my uncle, which by the way

> drives 6 hours just for an appointment!

> I hope to learn much here on PLS and feel I have come to the right

> place for it!

> Thanks for your time!

>

> Gentle hugs and kisses!!

> Joyce

[Guest guest]

Joyce:

Welcome to PLS Friends! I too have never heard that PLS is hereditary but

whatever the diagnosis might be in your family, the amount of information

available on here and the support are so helpful. I'm in Ottawa so it

sounds like we're practically neighbors, if I can be of any help just e-mail

me. Take care.

Jen L.

-- New to group

Hello everyone, I have joined to find out as much info as I can in

PLS!

I don't have it, or at least don't think I do!

My father though did have it and was diagnosed 20 years ago! It take

a few years before they found out what it truly was, but they did!For

those years we graudally seen his falls become more frequent and at

times looking like Rocky racoon, with his black eyes, and we said

this in a loving way!About 6 years ago they discovered my uncle,

dad's brother also has PLS. His falls gave him two broken hips and

later hip replacements and know uses a walker and soon a wheel chair.

This uncle is a twin, and needless to say, the question my uncle

has, will he be a candiadate for PLS as well? Can anyone tell me this?

In PLS I understand that 5% is familial! But does this also include

the children of those with PLS.

For myself, I have fibromyalgia, and I have a lot of body aches and

pains, and the cold weather makes it worse.

But, lately, I have notice different feelings in the stiffness of my

legs and it is also in my feet, my hands are becoming sore and weak

and achyand I can feel it travel up the arm. Now fibro does this as

well, but because dad and my uncle started out feeling this things as

well, I wonder what my chances are? Plus I have a sister wondering

the same thing about herslef, and she says she is just getting

clummsy!

We have been told that it isn't likely that we will get it, but there

seems to be some uncertainty to this as our family arleady has two

with PLS and possibly ALS!

Are we just being to paranoid?

Any help would be wonderful.

My father had one of the leading neuro doctors in the country and we

adore him, it is Dr. Strong out of London, Ontario! It has been an

honour to have him with dad and with my uncle, which by the way

drives 6 hours just for an appointment!

I hope to learn much here on PLS and feel I have come to the right

place for it!

Thanks for your time!

Gentle hugs and kisses!!

Joyce

[Guest guest]

Joyce,

Would you and your family consider participating in the PLS research at NW? All

it takes is sending in your blood and answering a few questions. It could

really help our research efforts since not many PLSers have family history. PLS

can be familial, it is just that since PLS is so rare, maybe 4-500 in the US, 5%

would mean maybe 20 to 25 in the US. And that is a big guess as to the numbers.

So it is really important to get every case of PLS, especially those that are

familial, to participate in the research.

It is really easy to do this. Here is the information:

December 11, 2001

Dear Member of the PLS community,

Our Neuromuscular Disorders Program is continuing a study involving sporadic

(or non-inherited) diseases of the motor neurons, such as PLS and ALS, that we

thought might be of interest to you. As you know, the cause(s) of these

disorders are not known. We are interested in determining whether genetic

factors may " predispose " an individual to developing sporadic cases of ALS and

PLS. We suspect that sporadic cases of these disorders may be the result of not

one, but several genetic factors coming together. Recent advances in the field

of statistical genetics make it possible to answer such questions if there are

sufficient study participants available.

Blood samples from patients and their living parents and brothers and

sisters are needed for this study. We need 400 sets of samples from a patient

and both of that patient's parents for each disease. Additionally, we need 400

sets of samples from a patient and that patient's brother or sister, who is

preferably at least as old as the patient was when he or she first noted

symptoms of the disease.

We need 2 tablespoons of blood from each participant. We will supply the

needed tubes and instructions for returning the samples via Federal Express

without charge to the participants. Most physicians and labs will draw the

samples without charge, but we will pay for drawing of samples if applicable.

Obviously there will not be an immediate benefit to patients, but an

understanding of the causes of disease of the motor neuron may eventually

benefit patients with these diseases.

Anyone willing to participate in this study, or wishing to discuss it,

please contact us. We look forward to working with you on this endeavor.

Dellafave MS

Nailah Siddique RN MSN

Teepu Siddique MD

Genetic Counseling

Clinical Nurse Specialist

Director, Neuromuscular Disorders Program

Professor of Neurology

1-dellafave@...

nsiddique@...

Professor of Cell and Molecular Biology

If you would like to participate in this study, please register on the research

page or contact Nailah directly.

If you are unable to participate in this research study (or did so already), and

would be interested in participating in future studies, please register on the

research page.

Also, go to this link to sign up or learn more about it:

http://www.als-pls.org/research.htm

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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

[Guest guest]

Joyce,

Would you and your family consider participating in the PLS research at NW? All

it takes is sending in your blood and answering a few questions. It could

really help our research efforts since not many PLSers have family history. PLS

can be familial, it is just that since PLS is so rare, maybe 4-500 in the US, 5%

would mean maybe 20 to 25 in the US. And that is a big guess as to the numbers.

So it is really important to get every case of PLS, especially those that are

familial, to participate in the research.

It is really easy to do this. Here is the information:

December 11, 2001

Dear Member of the PLS community,

Our Neuromuscular Disorders Program is continuing a study involving sporadic

(or non-inherited) diseases of the motor neurons, such as PLS and ALS, that we

thought might be of interest to you. As you know, the cause(s) of these

disorders are not known. We are interested in determining whether genetic

factors may " predispose " an individual to developing sporadic cases of ALS and

PLS. We suspect that sporadic cases of these disorders may be the result of not

one, but several genetic factors coming together. Recent advances in the field

of statistical genetics make it possible to answer such questions if there are

sufficient study participants available.

Blood samples from patients and their living parents and brothers and

sisters are needed for this study. We need 400 sets of samples from a patient

and both of that patient's parents for each disease. Additionally, we need 400

sets of samples from a patient and that patient's brother or sister, who is

preferably at least as old as the patient was when he or she first noted

symptoms of the disease.

We need 2 tablespoons of blood from each participant. We will supply the

needed tubes and instructions for returning the samples via Federal Express

without charge to the participants. Most physicians and labs will draw the

samples without charge, but we will pay for drawing of samples if applicable.

Obviously there will not be an immediate benefit to patients, but an

understanding of the causes of disease of the motor neuron may eventually

benefit patients with these diseases.

Anyone willing to participate in this study, or wishing to discuss it,

please contact us. We look forward to working with you on this endeavor.

Dellafave MS

Nailah Siddique RN MSN

Teepu Siddique MD

Genetic Counseling

Clinical Nurse Specialist

Director, Neuromuscular Disorders Program

Professor of Neurology

1-dellafave@...

nsiddique@...

Professor of Cell and Molecular Biology

If you would like to participate in this study, please register on the research

page or contact Nailah directly.

If you are unable to participate in this research study (or did so already), and

would be interested in participating in future studies, please register on the

research page.

Also, go to this link to sign up or learn more about it:

http://www.als-pls.org/research.htm

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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

[Guest guest]

Joyce,

I forgot to put this in my last email.

Nailah Siddique will be able to answer your questions about the chances of

inheriting PLS.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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

[Guest guest]

Joyce,

I forgot to put this in my last email.

Nailah Siddique will be able to answer your questions about the chances of

inheriting PLS.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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