help

[Guest guest]

I'm here and understand you being scared. you really need to go to the ER to

be checked out to be on the safe side. Please go!

[Guest guest]

Thank you I really needed someone else to tell me I was not just freaking

myself out. I will go I will have to leave my kids alone and drive myself

But I really think I need to go too. Thanks for just assuring me I was not

over exaggerating.

Cindy

Re: help

> I'm here and understand you being scared. you really need to go to the ER

to

> be checked out to be on the safe side. Please go!

>

>

>

[Guest guest]

--- Cindy, get your fanny to ER. It's probally nothing but then be

safe. let us know...hugs~~kelly

In TubalLigationReversal , " Cindy Tyloch "

wrote:

> Thank you I really needed someone else to tell me I was not just

freaking

> myself out. I will go I will have to leave my kids alone and drive

myself

> But I really think I need to go too. Thanks for just assuring me I

was not

> over exaggerating.

> Cindy

>

> Re: help

>

>

> > I'm here and understand you being scared. you really need to go

to the ER

> to

> > be checked out to be on the safe side. Please go!

> >

> >

> >

[Guest guest]

Cindy,

If I were you I would go to the local ER or atleast call my family

DR. Your heart is nothing to mess around with. I am a RN and I know

that if you are experiencing palpitations and your left arm is going

numb that it could be something serious or it could be nothing at

all. The point is better to be safe then sorry. I have heart trouble

I have had open heart surgery so I know a thing or two about heart

conditions. Please get some medical attention.

[Guest guest]

Hello Nyckeee,

My name is Marisa and I live in the NY/NJ area, I am also 43 years old married,

2 children and lots of fibroids!

I am also on the quest to find a doctor that just dosen't jump into hysto.

Anyway, in my search I came across a Dr. in Los Gatos, California (15min.

outside San 's Airport)

his name is Dr. Indman his number is

He has a website on the internet www.gynalternatives.com

his email address is indman@...

he claims to be a recognized expert in the treatment of fibroids and other

difficult gynecological problems.

I wanted to give him a call myself but he is quite far for me.

I will be seeing my old RE on 5/17 with the hopes that he will have something

different to suggest to me other than HYSTO.!!!!!!!

Good luck to you!

Marisa

mdc0610@...

[Guest guest]

You need to look into this yourself and stop listening to the

gyno's. The majority will tell you that you need a hyst. thats all

they know to say.

Look into myoectomy. The only problem is that there's a good

chance they will grow back and this is major surgory. Don't know

how big your fibroids are. This is a factor for other procedures as

well. Look into UFE. Uterine Fibroid Embolization. I had a 10 cm

fibroid, bleeding, gushing, hemmoraging. Awful. I started doing my

own research here on the posts. I decided that was the procedure

for me. I am 43 and have had my kids already so this was not a

factor. Look into joining the yahoo health embo group. These women

have had this done, or are in the process, researching, asking

questions. I think it's a fabulous obtion for women who want a less

invasive approach. Most women have been extremely happy with their

results.

Jen

> I was diagonosed 6 months ago with 3 uterine fibroids. To say the

least, my first gyno and my second opinion gyno have been no help at

all. The first one took an ultrasound and said without a doubt, you

need a full hysterectomy......I wasn't happy with that answer. I

called his office and asked if there was some other procedure he

could do. His office answered, no he says you need a full hysto.

Then the nurse was kind enough to add " hysto's are the only

procedures he knows! " I thanked her for her honesty but was shocked

at the fact he wouldn't refer me to another doctor that might have

other options.

>

> I finanally found a female gyno (that I was told by my general is

on the cutting edge of procedures) for a second opinion. She said

yes that I did have other options, but if the problems/symptoms

weren't not bothering me, that I should take the do nothing

approach. I tried that for a couple of months and my symptoms have

gotten worse! Extremely heavy bleedding, back pain, problems

breathing you name it I have it.

> So I went back to her thinking ok I have a couple of options lets

talk again....wouldn't you know it, when I went back the second

time, she now decides that I need a full hysto. I am sure that now

some of my systoms are probably frustration related.

>

> Help does anyone know a doctor in the Los Angeles area that can

really help me? I am desperate! I am 43 no children and about to be

married for the first time, if my fiance doesn't leave me, from not

being able to have sex!

>

> Please help does anyone have any suggestions?

>

> Nyckeee

[Guest guest]

I agree with Jen and just want to add: when you are anemic, your brain

becomes lazy. It is easy to give up and accept whatever the " experts "

tell you. You need to be passionate about this. It's your body. You

should want to know all the options before making your decision. Go

find a 2nd, 3rd, 4th opinion until you are satisfy with the doctor's

answers. Jackie

Re: Help

Look into myoectomy.

Look into UFE. Uterine Fibroid Embolization.

In uterinefibroids , Trinide Thornhill

wrote:

> Help does anyone know a doctor in the Los Angeles area that can

really help me? I am desperate! I am 43 no children and about to be

married for the first time, if my fiance doesn't leave me, from not

being able to have sex!

[Guest guest]

Thanks Jen:

I have stopped listening to the gyno's and have started researching, that's why

I posted an email on this site.....I am specificcally looking for a doctor in

the Los Angeles area, that maybe someone on this site had dealt with already.

Thanks for the reply

jenficks jenficks@...> wrote:

You need to look into this yourself and stop listening to the

gyno's. The majority will tell you that you need a hyst. thats all

they know to say.

[Guest guest]

> Look into myoectomy. The only problem is that there's a good

> chance they will grow back and this is major surgory. Don't know

> how big your fibroids are.

Actually, the story that your fibroids will grow back after myo is

just another of the gyns tactics to talk you into a hyst. I don't

have the actual statistics, but I believe that the probability that

you will grow new symptomatic fibroids requiring treatment is rather

low, somewhere in the 20 - 30% range. I think that older women have

an even lower risk as they have fewer prime fibroid growing years

before menopause.

[Guest guest]

Hi,

I know you don't need a full hyst just because you have fibroids. GESH! Removing

healthy ovaries for no reason and your cervix! You need to research about the

consequences of doing this. You CAN have a myo (possibly UAE), remember this. I

was told hyst 3 times (they couldn't do any other surgery). Your right, you need

another doc. Have you tried a RE? You need to check out anemia. You have heavy

periods and trouble breathing, sounds like anemia. Have your doc test you. Slow

FE (slow release) iron with vitamin C is what you need for anemia. Avoid soda

and caffeine drinks. You can get this iron at Target, Walmart, Kmart (Sam's Club

is cheapest). You want to check this out or could end up in the ER very ill.

Ku

Trinide Thornhill nyckeee@...> wrote:

She said yes that I did have other options, but if the problems/symptoms weren't

not bothering me, that I should take the do nothing approach. I tried that for

a couple of months and my symptoms have gotten worse! Extremely heavy

bleedding, back pain, problems breathing you name it I have it.

So I went back to her thinking ok I have a couple of options lets talk

again....wouldn't you know it, when I went back the second time, she now decides

that I need a full hysto. I am sure that now some of my systoms are probably

frustration related.

Help does anyone know a doctor in the Los Angeles area that can really help me?

I am desperate! I am 43 no children and about to be married for the first time,

if my fiance doesn't leave me, from not being able to have sex!

[Guest guest]

In her book " Sex, Lies & the Truth About Uterine Fibroids, " Carla Dionne

wrote " A second round of growth after a myomectomy happens about 25 percent

of the time but generally requires treatment (such as a second myomectomy

or a hysterectomy) only 10 percent of the time. Generally, the older you

are when you have a myomectomy, the less likely it is that the fibroids

will recur or that you will need additional treatment. "

Cheryl

Quoting terricecile terricecile@...>:

> Actually, the story that your fibroids will grow back after myo is

> just another of the gyns tactics to talk you into a hyst. I don't

> have the actual statistics, but I believe that the probability that

> you will grow new symptomatic fibroids requiring treatment is rather

>

> low, somewhere in the 20 - 30% range. I think that older women have

>

> an even lower risk as they have fewer prime fibroid growing years

> before menopause.

[Guest guest]

It's outrageous and shocking. Thank heavens for this nurse.

You are quite right to look to more plausible sources of advice. Of

course there are other fibroid treatments. You need the advice of a

skilled gynaecologist/radiologist who is up to date, experienced and

with a good track record. One that will advise on what is best for

you and not them, and who won't do anything inapprorpiate to please

the patient either.

I would definitely advise picking up at least one good book on

fibroids and ideally a few to compare what they say. They're mostly

affordable and worth their weight in gold. Go for one that promises

to discuss different treatment options, symptoms and what fibroids

are.

Ones I liked include, 'Sex, Lies and the Truth about Uterine

Fibroids' by Carla Dionne(Check edition),'What your Doctor may not

tell you about Fibroids', by Goodwin, Broder and Drum, 'Coping with

Fibroids by Marie (sorry, I forget surname..white cover, black

spine), and The Melbourne Fibroids Clinic book with the blue cover.

(The Sophie Bartich has many good things going for it. It's not so

positive about UAE though and it's less optimistic about the role of

diet helping fibroids, in contrast to Lark's books, which are

very informative on the topic of nutrition and fibroids.)

I am currently looking out for a copy of Dr. PArker's book,

recommended by Roma on this forum and others.

For more info on symptoms and related conditions check out the links

from Carla Dionne's own site as well as this one. I will email more

and if this isn't welcome, just disregard the email from 'Aztek'.

Even with very large fibroids it may be that they can be removed by a

myomectomy or shrunk by UAE or perhaps a combination of techniques or

some other established approach. I can't promise that, it depends

what the gynaecologist says about your particular case. Obviously

there will be some cases that are trickier with more risks. It's a

serious operation and for some women it should be a hysterectomy.

Sometimes a myomectomy must be converted into a hysterectomy when in

progress.

The fibroid books I've read say that fibroids don't always strike

again after a myomctomy and stats are quoted such as 30% of people

will get them again, and 70% won't. I can't speak for the reliability

of statistics....it's just what I've read. Statistics are given for

fibroids again after so many years have gone by. Having had the

abdominal myo and in my case an easy experience, I feel I could face

another abdom. myo again in the future, although of course I'd rather

not. Recovery experiences vary with all treatments, but most of the

myo accounts I've read on the forums have been positive. Get someone

good and get advice on avoiding nausea. The myo has been around for a

long time.

Artery embolisation has also been around a very long time, but it's

use for fibroids (Uterine Artery Embolisation), on it's own is a

comparitively recent thing & something that seems to have grown

rapidly in popularity. It is possible for women to have children

after a UAE, although the concern often mentioned is that the wrong

vessels might be embolised by accident, harming fertility. I'd ask

the radiologists and gynaecologists about that and what the current

thinking and research says.

You'll get honest information from women who've actually had

procedures. Both fresh out of hospital accounts and so many months

down the line accounts are useful. But...experiences will sometimes

differ.

Aztek

[Guest guest]

Thank you so much for the information, I have felt lost for so many months. I

feel that since I have found this source of info, I am finally getting some real

information. Now I just need to track down a doctor in my area, with whom I

feel comfortable with (a little gun shy) and move forward.

I am so uncomfortable and ready to get this taken care of, I finally see alight

at the end of the tunnel.

Thanks again for the great info,

Nyckeee

[Guest guest]

Hi,

Just to add to the discussion, I had a UFE done 3 years ago and was almost

symptom free for 2 years. In the last year, I started having pain/cramping

again and somewhat heavy bleeding/clots. At my last check-up, my gyn Dr.

informed me that more fibroids have grown and suggested another UFE. I am

47 and hoping that I can outlast the new bunch of fibroids until menopause

strikes.

Anyone else with a similar story?

Deb

[Guest guest]

Hi - Sorry to hear of your symptoms. That's the pits.

I thought UFE not only helped to shrink fibroids, but that new fibroids would

not grow either. Am I wrong? Does anyone have statistics on the number of

women that experienced shrinkage? Does anyone have statistics on the number of

women that experienced new growth? Does anyone know where I could locate these

numbers, and other info (good and bad) on UFE?

Thanks!

Amy

Debbie Magarrell debmag@...> wrote:

Hi,

Just to add to the discussion, I had a UFE done 3 years ago and was almost

symptom free for 2 years. In the last year, I started having pain/cramping

again and somewhat heavy bleeding/clots. At my last check-up, my gyn Dr.

informed me that more fibroids have grown and suggested another UFE. I am

47 and hoping that I can outlast the new bunch of fibroids until menopause

strikes.

Anyone else with a similar story?

Deb

[Guest guest]

This is a good web site for UFE statistics:

http://www.fibroiduae.com/fibro5.htm#anchor265926

There is a very low percentage of re-growth after UFE. Also, check

into the Embo group on Yayoo.

Barbara

> Hi,

> Just to add to the discussion, I had a UFE done 3 years ago and was

almost

> symptom free for 2 years. In the last year, I started having

pain/cramping

> again and somewhat heavy bleeding/clots. At my last check-up, my

gyn Dr.

> informed me that more fibroids have grown and suggested another

UFE. I am

> 47 and hoping that I can outlast the new bunch of fibroids until

menopause

> strikes.

> Anyone else with a similar story?

> Deb

[Guest guest]

This is a good web site for UFE statistics:

http://www.fibroiduae.com/fibro5.htm#anchor265926

There is a very low percentage of re-growth after UFE. Also, check

into the Embo group on Yayoo.

Barbara

> Hi,

> Just to add to the discussion, I had a UFE done 3 years ago and was

almost

> symptom free for 2 years. In the last year, I started having

pain/cramping

> again and somewhat heavy bleeding/clots. At my last check-up, my

gyn Dr.

> informed me that more fibroids have grown and suggested another

UFE. I am

> 47 and hoping that I can outlast the new bunch of fibroids until

menopause

> strikes.

> Anyone else with a similar story?

> Deb

[Guest guest]

This is a good web site for UFE statistics:

http://www.fibroiduae.com/fibro5.htm#anchor265926

There is a very low percentage of re-growth after UFE. Also, check

into the Embo group on Yayoo.

Barbara

> Hi,

> Just to add to the discussion, I had a UFE done 3 years ago and was

almost

> symptom free for 2 years. In the last year, I started having

pain/cramping

> again and somewhat heavy bleeding/clots. At my last check-up, my

gyn Dr.

> informed me that more fibroids have grown and suggested another

UFE. I am

> 47 and hoping that I can outlast the new bunch of fibroids until

menopause

> strikes.

> Anyone else with a similar story?

> Deb

[Guest guest]

Hi,

If your fibroid is in the wrong location, nothing may stop your bleeding. It may

slow down at times. BC pills can sometimes make bleeding worse, not better. You

can try using ice to slow the bleeding.

You have more options than just a hyst. That's for sure. If you don't want one,

don't get one. Can you have a resection? A UAE? I know you could have a myo. My

fibroid was larger than 4cm and I had a myo. No more heavy bleeding! Hyst was

not a option for me. As far as I'm concerned, it's for cancer. I couldn't have a

UAE (pedulated fibroid). So after being told hyst 3 times by 3 docs, I went out

of state and got a myo by a RE. Myo is always an option. There are never too

many or too large of fibroids to have a myo.

I'd be asking your doc more questions. Why didn't she inform you about ALL your

options and let you chose? How many myos has she done and how many have been

converted to a hyst. Can she send you to a IR to have you evaluated for a UAE?

Did your doc inform you about ALL of the possible negative effects of a hyst?

What kind of hyst is she suggesting? (There's more than 1 kind). Did she tell

you that a hyst is not a simple procedure?

Have you had a saline ultrasound or a MRI to get a better picture of your

fibroid?

If I was you, I go to a RE and see if I could first have a resection (a simple 1

day surgery with little recovery time). I'd discuss all of my possible options

and have better scans done if you haven't did this. BUt I would not let any doc

bully me into a treatment that I didn't want.

Ku

lwilson667 lwilson667@...> wrote:

I have only posted one message and I really didn't have all the

information I needed at the time. Thanks to the information I read

I was able to ask my OB/GYN the right questions. I have one fibroid

approximately 3 cm, and she says I am at 12 wks for uterine size. I

am going to have a hysteroscopy, D & C, and cauterization. She told

me that if the fibroid gets to 4 cm or larger she will not do this

procedure but wants to do a hysto. I am totally against this. My

periods are terrible but I am not anemic. My dr put me on provera

to suppress my periods but intead I have bled for 15 days and I am

still bleeding. I went from 20 mg to 40 mg in hope that it will

stop. Anybody have any suggestions or have been on this before?

Help please.

Thanks, Laurie

[Guest guest]

--- lwlwilson7 lwlwilson7@...> wrote:

> I have only posted one message and I really didn't

> have all the

> information I needed at the time. Thanks to the

> information I read

> I was able to ask my OB/GYGYNhe right questions. I

> have one fibroid

> approximately 3 cm, and she says I am at 12 wkwksor

> uterine size. I

> am going to have a hyhysteroscopyD & C, and

> cauterization. She told

> me that if the fibroid gets to 4 cm or larger she

> will not do this

> procedure but wants to do a hyhysto I am totally

> against this. My

> periods are terrible but I am not anemic. My drdrut

> me on prprovera

> to suppress my periods but inintead have bled for 15

> days and I am

> still bleeding. I went from 20 mg to 40 mg in hope

> that it will

> stop. Anybody have any suggestions or have been on

> this before?

> Help please.

> Thanks, Laurie

>

>

>

Laurie,

I have a similar condition, Iam 46 and have had 3

children. My GYN had suggested a Hysterectomy, I

wanted other options. Went to a specialist who deals

with non-invasive procedures. He explained to me how

Fibroids and the Uterine lining are treated as

seperate issues. My Fibroid was causing my uterus to

enlarge to about a 10 week pregnancy size. He really

was not that alarmed . He said to get checked

regularly every 4 months, to make sure that it isn't

growing rapidly. As far as heavy bleeding or cramping,

or even periods closer together, he suggested I take

ANAPROX 3 days before my cycle begins. It would

control the bleeding, and lesson the cramps. No

surgery is planned, just regular check-ups. He did

suggest a D&C somewhere in my future. It helps with

the periods, and does give you a good read on the

cells in the uterine wall. Pap smears only check the

cervex for cancer. Even a uterine biposy as a

poposibilty if I continued to have problems after the

medication prescribed. If you E-mail can you

send it to my attention, so I can see it on the

subject line while checking through them.

Thanks,

from Baltimore

AKA coffeetalk

[Guest guest]

Thanks Amber! It sounds like your doctor gave you SO

much more information than mine. I wish I had known

so many things a long time ago, but there was no way

to. I went off the pill over a year ago and we've

been TTC, but we slowly along the way found out about

the uterine septum, and everything else so that has

been halted. My RE's plan now is to remove the

uterine septum on 8/11 and then work to get me

pregnant as quick as possible. He said he'd let us

try on our own for just a couple of months before

trying fertility drugs and then IVF. Which all really

scares me. Then he would put me back on the pill

after having a baby (hopefully) to help the

endometriosis.

It's just frustrating because had I known all this

before I would have stayed on the pill all this time.

Can't live in the past though!

Thanks again!

--- amber jason amberjason32@...> wrote:

> HI

>

> I had severe endometriosis (level 5) surgically

> removed in March 2004. Because it was so severe my

> doctor advised me to stay on the pill (with no

> breaks

> for menstruation) and because of this I have not had

> a

> period since March 2004. Staying on the pill to

> manage

> my endo was not a problem because I have not yet

> TTC.

> My doctor has recommended IVF for a number of

> reasons

> including to assist in managing the endo. If I TTC

> naturally, I would have periods which would bring

> back

> the endo. Apparently the periods cause the endo.

>

> My doctor told me that endo quite often returns

> 1.5-2

> years after it has been surgically removed. I am

> coming up to 1.5 years since the surgery and I

> wonder

> whether it has returned for me. Sometimes, if I am

> late taking my pill (even by 8 hours) I get bad pain

> and spotting and I wonder if that is the endo or if

> the spotting is causing the endo. After I had it

> removed, I had spotting and pain once a month (even

> though I didn't have a period) for almost a year.

> But

> each incident only lasted 5-10 minutes and was

> treated

> effectively with naproxen/naprosen anti-inflammatory

> medication.

>

> My endo is caused by my BU/UU. I had a lap/hyst in

> the

> hope of removing a septum for a suspected BU/SU but

> they couldn't remove it because it was a wall not a

> septum. The endo comes from the rudimentary horn,

> which has an endometrial lining.

>

> Anyway, maybe you should speak to your doctor about

> staying on the pill until you are TTC and not having

> too many periods in between?? I'm sure there are a

> number of options for you depending on your

> particular

> situation.

>

> All the best.

> Amber

>

> --- Owen lowen1977@...> wrote:

>

> >

> > Hi everyone,

> > I have not posted for a while, but have been

> reading

> > everything. For a recap, I was misdiagnosed as

> UD,

> > but through lap/hyst I was actually SU with a HUGE

> > vaginal septum. I had my surgery in March and

> just

> > went back yesterday for a saline sonogram.

> > Unfortunately, we have to do another surgery

> because

> > there is still some uterine septum left. While

> that

> > was very disheartening, that doesn't scare me as

> > much

> > as the endometriosis. Yesterday my doctor was not

> > very upbeat about it. They removed a cyst and

> alot

> > of

> > the endometriosis in March, but it is already

> back.

> > He didn't tell me if I was mild, moderate, or

> > severe,

> > but I am going to call back today to see if he has

> > any

> > input on that.

> > I just really want to know if any of you have

> > experienced this. Are my chances really bad to

> have

> > these 2 strikes against me? Is there anything I

> can

> > do? Any advice or success stories with

> > endomentriosis

> > would be SO helpful! I feel like a ticking time

> > bomb

> > with all this blood constantly moving the wrong

> way

> > inside me.

> >

> > Thank you!

> >

> > 28, SU resected 3/05 and scheduled for #2 8/11/05

> > --- Payne jd_payne@...> wrote:

> >

> > > Hi ,

> > >

> > > Just want to let you know that I have a

> beautifil

> > 14

> > > year old neice who was born at 30 weeks. She is

> > in

> > > advanced classes at school, and din't have any

> > > developmental problems growing up. I look at my

> > > calendar every day to see how far I have to make

> > it

> > > to 30 weeks, so that maybe I can breathe a sigh

> of

> > > relief.

> > >

> > > My BU has only been seen by u/s, and during a

> > visit

> > > with a perinatologist, he saw what he thought

> was

> > a

> > > pretty solid septum, but still called my uterus

> a

> > > " probable " BU. I guess neither one of us will

> > know

> > > until we have further checking done.

> > >

> > > Good Luck, I'm thinking about you!

> > >

> > >

> > >

> > > rachelh4207 RACHEL_2012@...> wrote:

> > > Okay i went to the doc today, the lady said my

> > baby

> > > is sitting on my

> > > cervix in the EXACT same position that she was

> in

> > 6

> > > wks ago, hasnt

> > > moved at all. and they told me because of my

> heart

> > > shaped uterus PLUS

> > > the septal band

> > > that seperates part of my uterus to like a whole

> > > other uterus, that

> > > if she hasnt moved in 3 wks or so, she isnt

> going

> > to

> > > be able to.

> > > anyways. i

> > > told them about the pressure i was feeling and

> > they

> > > said that they

> > > needed to check my cervix with a VAGINA u/s

> (gotta

> > > love those YUK)

> > > so they did that. they

> > > said im not dilated but my cervix's is way

> thiner

> > > than he wants it

> > > to be and than it should be. which means he

> thinks

> > i

> > > need to have it

> > > watched and if i think im having contractions at

> > ALL

> > > for like four

> > > in an hr, to go straight to L&D b/c ill have a

> > fast

> > > labor b/c its

> > > already thinning big time, and they wont be able

> > to

> > > stop me from

> > > having her and 30 wks is just TOO soon. sooooo

> > thats

> > > just great

> > >

> > > So i have a question, the fact that i have a

> whole

> > > other part of a

> > > uterus, does that make me SU?

> > >

> > >

> > >

> > >

> > > Share bookmarks:

> > >

> >

>

http://groups.yahoo.com/group/MullerianAnomalies/links/

> > >

> > > Share files:

> > >

> >

>

http://groups.yahoo.com/group/MullerianAnomalies/files/

> > >

> > > The Congenital Uterine Anomalies Home Page:

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Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

[Guest guest]

First Please realize Cheryl that there are only supposed to be 500 PLS

patients in the whole US so getting together for a monthly or weekly

support group of only PLS doesn't work. However, since PLS in covered

by ALSA or ALS of which there is about 40,000 in the US, many of us go

to the ALS support group meeting. In fact I just got back from one

here in FL. Lifted my spirits greatly especially after Bill announced

to the group I'd put on weight and his wife attacked him with her cake-

cutting knife. You can locate your local group at the ALSA dot org web

page. In some states PLS is also covered by the MDA also on the

Internet with a special page for ALS/PLS. Our ALS Group discusses meds

that work and don't, what neuros are best, what studies we are aware

of, which mobility devices are best. Today we gave a newby ideas for

rolling over in bed without having to wake his wife for assistance.

We do have Connections where we gather usually from 3 or 4 states.

There is a list on our newsletter page " Synapse " . I'm hoping someone

who has all our web addresses ready to copy will send them to you.

Bottom line - this group is the place to be if you are dealing with PLS

or HSP or possible ALS as a diagnosis. Anyway you could drum up a used

labtop and get her online?

Also realize PLS goes in all varieties from a simple limp for years

without progression to rapid advance must - well I guess you've heard

that Hawking is rumored to have the PLS version of ALS.

Hope this helps.

Eva

>

> Does anyone know if there are local groups in KC, MO for people to

> meet and get support? My cousin has just been diagnosed with PLS and

> it is progressing rapidly. She has swelling in her feet and ankles

> and has pain. I told her I would try to find her a support group,

but

> she does not have computer access. Any help or advice would be

> greatly appreciated. Thank you and God Bless.

>

[Guest guest]

Check here for PLS/HSPers who have registered in this data base.

_http://www.geocities.com/freyerse/plsdb.html_

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

I'll send you post to the HSP List, which is our sister disorder, and is

part of our Spastic Paraplegia Foundation.

G.

California

[Guest guest]

I am gonna go on and apologize if anything I say violates the religion

rule. I am going to mention my religion, but I am in no way tryin to

promote it or anything. Its just part of the pain today, and I think

everyone could sympathize with this one..

I hate today.

I cried all night last night because of a fight with my husband. Let

me just say, because I dont want to talk about it, he said and did

something last night that makes me feel less human and more like

property.

I was sitting in church today... even when I hurt, I still go, because

I guess when it boils down, I still believe God is the only person who

ever loved me really. Plenty say they do, but most of them end up

being abusive in one way or another... I learned a long time ago, talk

is cheap, but actions are honest.

The pastor was talking about heaven today. I found myself actually

crying because truthfully, I want to die. I dont want to be here

anymore and i dont want to live. I dont want to fight anymore and i

dont want to do this. I dont want to spend hours online just so I can

in some impersonal way be around someone that " gets it " . I dont want

to go to another doctor that doesnt care and hurts me more than helps.

I dont want to hear any more of my so called loved ones' bull s**t. I

hate life and everyone and everything in it.

Before anyone noticed me crying, I left the sanctuary and went to the

parlor. My church has a few rooms like the parlor, with super comfy

couches and such for people who arent feeling well or nursing mothers

or whatever to go and lie down or what ever. Its quiet and dimly lit,

and they pipe the sermon in there, so you can hear, but not be around

people. I sat there, and just cried.

I snuck back in to the service at the end, mainly to tell my mom I was

leaving. I sat down, because of course, I was tired and hurting from

this disease that plagues my pathetic excuse for a life and had to

take a break because I had walked for 100 feet.

I went ahead and waited the 10 minutes until the service was over. Its

not like it mattered really, my husband was home, asleep, because its

not like he was going to be taking care of me today. its almost 4 an

he just got up. must be nice.

This lady walked up to me as I was leaving and told me " I want you to

know that its so inspiring to see you here. I see you moving slowly

because you hurt, and cringe when you have tostand up... and I want

you to know I think you are brave for trying so hard. "

It meant alot... but i cried again.

One in a hundred act like she does and at least appreciate out

efforts. Probably more like one in a thousand. As nice as that was,

she isnt one of the people that it would have meant alot from... like

my husband, family, or friends, who seem angry at me for slowing down

their lives.

sorry I am so negative today. i dont want to fake another smile to put

others at ease.

-Suzanne

[Guest guest]

Hi Suzanne,

My name is Kristi. Here is a giant ((HUG))! My husband and I were going

through a really rough time, as well. Not saying exactly what is going on,

suffice it to say that he is interested in a somewhat alternative lifestyle. I

asked him to go to counseling with me, but he wouldn't go, so I went alone. I

think it was the best thing that I could ever do. She was a third party who

didn't know anything about me and she gave some advice and listened (mostly

listened to me blubber!). It caused me to do an awful lot of soul searching.

Finally I was just flat out honest and told him what I wanted and needed. I had

to have these things for my own peace of mind, my health depended on it. Not to

mention our daughter's happiness. If he didn't think he could live with that, I

would have to say good-bye. We've done alot of talking and are still talking,

but things are slowly getting better? I guess time will tell, huh?

You are a special person, don't forget that. God has a plan for you. Do what

makes you happy. I'm so glad that you went to church today. Seeing you there

made a difference in that one ladies life, or she wouldn't have said anything to

you.

I hope that helps? Something in your letter called out to me, so I wrote.

Take care and I hope you have a great night.

Hugs,

Kristi

Suzanne yourock.irule@...> wrote:

I am gonna go on and apologize if anything I say violates the religion

rule. I am going to mention my religion, but I am in no way tryin to

promote it or anything. Its just part of the pain today, and I think

everyone could sympathize with this one..

I hate today.

I cried all night last night because of a fight with my husband. Let

me just say, because I dont want to talk about it, he said and did

something last night that makes me feel less human and more like

property.

I was sitting in church today... even when I hurt, I still go, because

I guess when it boils down, I still believe God is the only person who

ever loved me really. Plenty say they do, but most of them end up

being abusive in one way or another... I learned a long time ago, talk

is cheap, but actions are honest.

The pastor was talking about heaven today. I found myself actually

crying because truthfully, I want to die. I dont want to be here

anymore and i dont want to live. I dont want to fight anymore and i

dont want to do this. I dont want to spend hours online just so I can

in some impersonal way be around someone that " gets it " . I dont want

to go to another doctor that doesnt care and hurts me more than helps.

I dont want to hear any more of my so called loved ones' bull s**t. I

hate life and everyone and everything in it.

Before anyone noticed me crying, I left the sanctuary and went to the

parlor. My church has a few rooms like the parlor, with super comfy

couches and such for people who arent feeling well or nursing mothers

or whatever to go and lie down or what ever. Its quiet and dimly lit,

and they pipe the sermon in there, so you can hear, but not be around

people. I sat there, and just cried.

I snuck back in to the service at the end, mainly to tell my mom I was

leaving. I sat down, because of course, I was tired and hurting from

this disease that plagues my pathetic excuse for a life and had to

take a break because I had walked for 100 feet.

I went ahead and waited the 10 minutes until the service was over. Its

not like it mattered really, my husband was home, asleep, because its

not like he was going to be taking care of me today. its almost 4 an

he just got up. must be nice.

This lady walked up to me as I was leaving and told me " I want you to

know that its so inspiring to see you here. I see you moving slowly

because you hurt, and cringe when you have tostand up... and I want

you to know I think you are brave for trying so hard. "

It meant alot... but i cried again.

One in a hundred act like she does and at least appreciate out

efforts. Probably more like one in a thousand. As nice as that was,

she isnt one of the people that it would have meant alot from... like

my husband, family, or friends, who seem angry at me for slowing down

their lives.

sorry I am so negative today. i dont want to fake another smile to put

others at ease.

-Suzanne

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

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