(No subject)

[Guest guest]

Jerry....Welcome to PLS-Friends. You'll find that you have a lot of them here

and I encourage you to stay in contact with all of us as you gain more

information about your condition and when you feel the need for support.

I am Doug Brand and live in St. sburg, Florida with my wife Flora and our

26 year old daughter Kelley. I am the Art Director for the St. sburg Times

and we have lived in this beautiful community for over 40 years. I am also the

caregiver to my wife who is the PLS patient.

Flora began to exhibit symptoms over 5 years ago. We bounced from one doctor to

another until we finally land in the offices of a neurologist who ultimately

diagnosed her condition. In the beginning, he was leaning towards ALS, which

you may know is a death sentence. However, after numerous tests, tissue samples

, MRIs, scans and the like, he was convinced that Flora didn't present

sufficient markers to be labelled with ALS. Instead, he introduced us to

PLS...the lesser of two evils.

Over the years, Flora has been in very gradual decline. She can no longer work

and has qualified for and is getting full disability. Her speech is slurred and

at time inaudible and she has developed a severe spastic gait. She must use a

walker around the house and an electric scooter when we go out. She

occasionally chokes on food and liquids, so she must be very careful when

eating. She also experiences pain and aches in her neck, shoulders, hips, legs

ankles and feet. Sometimes she feels a " burning or tingling " sensation. She

has extreme lack of stamina and often feels lightheaded and dizzy. Through it

all, she has remained very strong and determined not to give an inch without a

fight. We don't know where this disease is going to take us, but we have

adopted a very basic approach to handling it...and it goes like this. SHE HAS

THE DISEASE AND IT'S NOT GOING TO GO AWAY; AT THIS POINT, THERE ARE NOT CURES

AND IT MAY VERY WELL CONTINUE TO GET WORSE; SO WE DEAL WITH EACH ISSUE AS IT

ARISES AND THEN MOVE ON. Coming to terms with her condition in this manner has

enabled us to get over the fear and terror we all felt in the beginning. Also,

these dear people at PLS-FRIENDS have been an invaluable sourece of information

and support.

Good luck, Jerry and thanks for contacting us. Stay brave and informed. Keep

in touch and share your progress with others. Kind thoughts always....Doug/St.

Pete, Fl.

_______________________________________________________________________________

Subject: (no subject)

From: <PLS-FRIENDSonelist> at ~Internet

Date: 4/1/99 10:32 PM

HI

My name is jerry I was dxed in oct 98 with pls or als the vedict is

stillout but from what i have read with the little info avaliable about pls i am

more inclened to feel that will be final dx .

I am 43 year old who worked as a correction officer in Michigan until

finally applying for and receiveing a medical retirement last June.

As i recal my symptoms strated with a twitching of my left foot and

feeling of heaviness.As time went by the twitching moved up my left leg my right

foot my right leg.I became to wake up gagging from a souund sleep and in oct of

98 a video throat study showe abnormal swallow reflex my voice has also taken on

a hoarsness over the months.

I have had 5 emgs done on my legs and feet 3 have been abnormal and

2 normal also emgs on my hands showed carpel tunnel in both right and left.

My neuroligist is not sure what to dx me with so is sending me to

University Of Michigan for more tests and another opinion..

Would like to hear from others about the their symptoms and

frustrations getting a proper dx of the disease.

Thaks

Jerry

[Guest guest]

Jerry....Glad I got through to you and promise to stay in touch. Being an

artist, I am sitting here at my MAC designing for 8 to 10 hours a day and

constantly have my e-mail on, so I try to respond as quickly as possible.

One thing you are going to discover is that no two PLS patients are alike. The

disease manifests itself differently in so many ways, which is partly why it is

so difficult to diagnose. Its symptoms mirror those of many other neurological

disorders and the doctors (at least those who really care) take great pains to

avoid a mis-diagnosis. PLS has been around for decades, but not recognized as a

disease unto itself until recent years. That is why there is so little written

about it bacause the patient profiles and documentation is very limited. You'll

probably learn more through PLS-FRIENDS that you can in medical textbooks.

At anyrate, Jerry. Surround yourself with those who care and understand.

Continue your search for answers and information. Stay focused and positive.

Kind thoughts always....Doug

_______________________________________________________________________________

Subject: Re: (no subject)

From: <PLS-FRIENDSonelist> at ~Internet

Date: 4/2/99 8:09 AM

Doug:

Thanks so much for the reply so many times i have sent e-mails with no words

returned.I as Flora also have the contstant pain in neck shoulders hips legs

and ankles.I find a certain comfort in knowing that others share simular if not

exact symptoms as me.Its been t o say the least a very frustrating past 4 years

or so from the onset til now.I also have been through every test there is A-Z

(aides to zinc poisening) I also feel some releife in having found a doctor who

knows there is a physical problem and not some form of mental Illness.As of now

i use a cane when out and about but have enough things to grab on to in the

house to keep me from falling which i have done on a few occassions.I fully

agree with yours and Floras attitude it is not gonna go away so take each day at

a time and live as comfortable as possible.and I also know how hard it is to

keep a100% possitive attitude on a daily basis whil going through unpredictable

future of this disease.Please feel free to E-Mail anytime.I spent a lot of time

at this computer so will answer all.

In Peace

Jerry

(no subject)

From: <PLS-FRIENDSonelist> at ~Internet

Date: 4/1/99 10:32 PM

HI

My name is jerry I was dxed in oct 98 with pls or als the vedict is

stillout but from what i have read with the little info avaliable about pls i

am

more inclened to feel that will be final dx .

I am 43 year old who worked as a correction officer in Michigan until

finally applying for and receiveing a medical retirement last June.

As i recal my symptoms strated with a twitching of my left foot and

feeling of heaviness.As time went by the twitching moved up my left leg my

right

foot my right leg.I became to wake up gagging from a souund sleep and in oct

of

98 a video throat study showe abnormal swallow reflex my voice has also taken

on

a hoarsness over the months.

I have had 5 emgs done on my legs and feet 3 have been abnormal

and

2 normal also emgs on my hands showed carpel tunnel in both right and left.

My neuroligist is not sure what to dx me with so is sending me to

University Of Michigan for more tests and another opinion..

Would like to hear from others about the their symptoms and

frustrations getting a proper dx of the disease.

Thaks

Jerry

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

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<STYLE></STYLE>

</HEAD>

<BODY bgColor=#ffffff>

<DIV><FONT face=Arial size=4>HI </FONT></DIV>

<DIV><FONT face=Arial size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; My name is jerry I

was dxed in oct 98 & nbsp; & nbsp; with pls or als the vedict is stillout but from

what i have read with the little info avaliable about pls i am more inclened

to

feel that will be final dx .</FONT></DIV>

<DIV><FONT face=Arial size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; I am

43

year old who worked as a correction officer in Michigan until finally applying

for and receiveing a medical retirement last June.</FONT></DIV>

<DIV><FONT face=Arial size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp;As

i recal my symptoms strated with a twitching of my left foot and feeling of

heaviness.As time went by the twitching moved up my left leg my right foot my

right leg.I became to wake up gagging from a souund sleep and in oct of 98 a

video throat study showe abnormal swallow reflex my voice has also taken on a

hoarsness over the months.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; I have had

5

emgs done on my legs and feet & nbsp; 3 have been abnormal and 2 normal also

emgs

on my hands showed carpel tunnel in both right and left.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; My

neuroligist is not sure what to dx me with so is sending me to University Of

Michigan for more tests and another opinion..</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp;

Would like to hear from others about the their symptoms and frustrations

getting

a proper dx of the disease.</FONT></DIV>

<DIV> & nbsp;</DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp;

Thaks </FONT></DIV>

<DIV> & nbsp;</DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; &

nbsp; & nbsp;Jerry

</FONT></DIV></BODY></HTML>

[Guest guest]

Doug:

Thanks so much for the reply so many times i have sent e-mails with no words

returned.I as Flora also have the contstant pain in neck shoulders hips legs

and ankles.I find a certain comfort in knowing that others share simular if not

exact symptoms as me.Its been t o say the least a very frustrating past 4 years

or so from the onset til now.I also have been through every test there is A-Z

(aides to zinc poisening) I also feel some releife in having found a doctor who

knows there is a physical problem and not some form of mental Illness.As of now

i use a cane when out and about but have enough things to grab on to in the

house to keep me from falling which i have done on a few occassions.I fully

agree with yours and Floras attitude it is not gonna go away so take each day at

a time and live as comfortable as possible.and I also know how hard it is to

keep a100% possitive attitude on a daily basis whil going through unpredictable

future of this disease.Please feel free to E-Mail anytime.I spent a lot of time

at this computer so will answer all.

In Peace

Jerry

(no subject)

From: <PLS-FRIENDSonelist> at ~Internet

Date: 4/1/99 10:32 PM

HI

My name is jerry I was dxed in oct 98 with pls or als the vedict is

stillout but from what i have read with the little info avaliable about pls i

am

more inclened to feel that will be final dx .

I am 43 year old who worked as a correction officer in Michigan until

finally applying for and receiveing a medical retirement last June.

As i recal my symptoms strated with a twitching of my left foot and

feeling of heaviness.As time went by the twitching moved up my left leg my

right

foot my right leg.I became to wake up gagging from a souund sleep and in oct

of

98 a video throat study showe abnormal swallow reflex my voice has also taken

on

a hoarsness over the months.

I have had 5 emgs done on my legs and feet 3 have been abnormal

and

2 normal also emgs on my hands showed carpel tunnel in both right and left.

My neuroligist is not sure what to dx me with so is sending me to

University Of Michigan for more tests and another opinion..

Would like to hear from others about the their symptoms and

frustrations getting a proper dx of the disease.

Thaks

Jerry

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

<!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0 Transitional//EN " >

<HTML><HEAD>

<META content= " text/html; charset=iso-8859-1 " http-equiv=Content-Type>

<META content= " MSHTML 5.00.2014.210 " name=GENERATOR>

<STYLE></STYLE>

</HEAD>

<BODY bgColor=#ffffff>

<DIV><FONT face=Arial size=4>HI </FONT></DIV>

<DIV><FONT face=Arial size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; My name is jerry I

was dxed in oct 98 & nbsp; & nbsp; with pls or als the vedict is stillout but from

what i have read with the little info avaliable about pls i am more inclened

to

feel that will be final dx .</FONT></DIV>

<DIV><FONT face=Arial size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; I am

43

year old who worked as a correction officer in Michigan until finally applying

for and receiveing a medical retirement last June.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;As

i recal my symptoms strated with a twitching of my left foot and feeling of

heaviness.As time went by the twitching moved up my left leg my right foot my

right leg.I became to wake up gagging from a souund sleep and in oct of 98 a

video throat study showe abnormal swallow reflex my voice has also taken on a

hoarsness over the months.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; I have had

5

emgs done on my legs and feet & nbsp; 3 have been abnormal and 2 normal also

emgs

on my hands showed carpel tunnel in both right and left.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; My

neuroligist is not sure what to dx me with so is sending me to University Of

Michigan for more tests and another opinion..</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

Would like to hear from others about the their symptoms and frustrations

getting

a proper dx of the disease.</FONT></DIV>

<DIV> & nbsp;</DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nb\

sp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\

; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

Thaks </FONT></DIV>

<DIV> & nbsp;</DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nb\

sp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\

; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;Jer\

ry

</FONT></DIV></BODY></HTML>

[Guest guest]

Jerry,

My ex husband was dx with pls last year. He is 42 y.o. He had two spinal

taps recently. We have two children, and soo I have been concerned about

this disease as well as my girls are worried. His began with a dragging

left foot, and he falls often. He is self-employed and so does not have

anything to fall back on. I'm so grateful to this site. There is little

info out there. The best seems to be from people like you who share their

experience. Thanks, Lawrence

[Guest guest]

Don't give up on a diagnosis! My husband is 43 years old and has had PLS for

20 years. It took 3 different neurologists and many tests before he was

finally diagnosed in 1990 with PLS. There is much more information even now,

about PLS to patients and physicians, than there was just 10 years ago.

Ask your neurologist if your symptoms could be PLS and I am sure if they are

not familiar with the disease, they will do some research about it.

Best of luck,

Trish

[Guest guest]

Jerry,

It certainly is very frustrating and nerve wracking to wait for a

final diagnosis--especially when ALS is a possibility. But based on

the info that I have, the doctors do not have any real choice in many

cases but to not make a specific diagnosis.

A PLS diagnosis is a diagnosis of exclusion. This means that your

physician must rule out every possible cause of your symptoms, before

he can diagnose you with certainty. And it may be too early to tell

which of the 2 diseases you have.

No doubt you have had an MRI--to rule out tumors and disk problems.

Your blood was examined--to rule out a malabsorption problem. Your

spinal fluid was examined--to rule out (along with the MRI) MS. And

you've probably had lots of other tests too.

Believe me, if this was easy for your doctor, he would be very happy

to make a diagnosis. Doctors do not like uncertainty, and do not like

telling their patients that they are not sure of a diagnosis. I know

because my wife and many of my friends are physicians. Unfortunately,

only time will tell.

I wish you all the best. Please stay in touch. Keep the faith.

Mark

--- Jerry wrote:

> HI

> My name is jerry I was dxed in oct 98 with

> pls or als the vedict is stillout but from what i

> have read with the little info avaliable about pls i

> am more inclened to feel that will be final dx .

> I am 43 year old who worked as a correction

> officer in Michigan until finally applying for and

> receiveing a medical retirement last June.

> As i recal my symptoms strated with a

> twitching of my left foot and feeling of

> heaviness.As time went by the twitching moved up my

> left leg my right foot my right leg.I became to wake

> up gagging from a souund sleep and in oct of 98 a

> video throat study showe abnormal swallow reflex my

> voice has also taken on a hoarsness over the months.

> I have had 5 emgs done on my legs and

> feet 3 have been abnormal and 2 normal also emgs on

> my hands showed carpel tunnel in both right and

> left.

> My neuroligist is not sure what to dx me

> with so is sending me to University Of Michigan for

> more tests and another opinion..

> Would like to hear from others about

> the their symptoms and frustrations getting a proper

> dx of the disease.

>

>

> Thaks

>

>

> Jerry

>

<HR>

<!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0 Transitional//EN " >

<HTML><HEAD>

<META content= " text/html; charset=iso-8859-1 " http-equiv=Content-Type>

<META content= " MSHTML 5.00.2014.210 " name=GENERATOR>

<STYLE></STYLE>

</HEAD>

<BODY bgColor=#ffffff>

<DIV><FONT face=Arial size=4>HI </FONT></DIV>

<DIV><FONT face=Arial size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; My name is

jerry I

was dxed in oct 98 & nbsp; & nbsp; with pls or als the vedict is stillout

but from

what i have read with the little info avaliable about pls i am more

inclened to

feel that will be final dx .</FONT></DIV>

<DIV><FONT face=Arial size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

I am 43

year old who worked as a correction officer in Michigan until finally

applying

for and receiveing a medical retirement last June.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;As

i recal my symptoms strated with a twitching of my left foot and

feeling of

heaviness.As time went by the twitching moved up my left leg my right

foot my

right leg.I became to wake up gagging from a souund sleep and in oct of

98 a

video throat study showe abnormal swallow reflex my voice has also

taken on a

hoarsness over the months.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; I

have had 5

emgs done on my legs and feet & nbsp; 3 have been abnormal and 2 normal

also emgs

on my hands showed carpel tunnel in both right and left.</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

My

neuroligist is not sure what to dx me with so is sending me to

University Of

Michigan for more tests and another opinion..</FONT></DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

Would like to hear from others about the their symptoms and

frustrations getting

a proper dx of the disease.</FONT></DIV>

<DIV> & nbsp;</DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nb\

sp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\

; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

Thaks </FONT></DIV>

<DIV> & nbsp;</DIV>

<DIV><FONT face=Arial

size=4> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nb\

sp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\

; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;Jer\

ry

</FONT></DIV></BODY></HTML>

_________________________________________________________

[Guest guest]

I have done what I thought was a lot of reading and research on choclear

implants and have never run across this problem even mentioned in passing.

Whenever I have asked the implant team about possible complications they say

they are not even worth mentioning they are so uncommon.

I am so glad some of you knew what this meant for little Robby. My prayers

are still with the family.

God bless,

Nikki

[Guest guest]

Hi all,

Thought this was interesting and maybe might save a little money.

Take care!

(no subject)

>If your VCR has a year setting on it, which most do, you will not be able

to

>use

>the programmed recording feature after 12/31/99. Don't throw it away.

Instead

>set it for the year 1972 as the days are the same as the year 2000. The

>manufacturers won't tell you. They want you to buy a new Y2K VCR. Pass

>this along to all your friends.

>

>Kenya

>

[Guest guest]

Tammy first and fore most welcome to the list. Ia m sure you will find here

all the inforamtion and support you are looking for. You will here many

mom's and dad's talk about the frusteration of doctors who do not listen and

of being scared for the future...we have all been there or are there.

Welcome to the list..hopeful we all will be able to answer dome of your

questions!

~ and 's Mom

At 08:04 PM 9/3/99 EDT, you wrote:

>From: all26babes@...

>

>Hello,

>

>I just wanted to take a moment to introduce myself. I am a Stay at home mom

>of three wonderful boys ( former 36wker 11/26/94, Austin former 34wker

>3/26/96 and Aleksander former 32wker 8/26/98) Alek spent 40 days in NICU due

>to problems he faced because of his prematurity. Within weeks of his

>homecoming, I noticed he didn't calm to my voice what so ever. He would even

>sleep through his sleep apnea monitor when it alarmed. I brought it up to

>the neonatologist and ped. and they all told me he had past the hearing test

>when discharged from the NICU and I was just " overly concerned " for nothing.

>They said let's wait a few months and if your still concerned we'll order

>another test. Well at his next appt I said I'm still concerned they said

>well because he was premature let's give him until he's 6mths, so every visit

>until 6mths I would still comment about how he still wasn't calming to my

>voice, not startling to loud noises, etc.....they still told me there was

>nothing to worry about. Finally the ped wanted us to see a physical

>therapist for Alek's developmental delays. During the evaluation I told them

>again about the hearing concerns I had and they tried a few unscientific

>tests =) She said your right he doesn't seem to hear right and should be

>retested....so she wrote up her evaluation and noted about 10 times in it

>that Alek needed further hearing testing before his physical and speech

>evaluation could be completely accurate. That was the trick finally after

>months of struggling the doctor's gave me my referral for a EEG. Of course

>then Alek started getting ear infections left and right and always a day or

>two before the tests. To make a long story alittle shorter, we had the test

>done last week and received the results this morning. His right ear seems ok

>but he shows " neurological hearing loss " in his left ear. This is all the

>ped would tell me. What does this exactly mean? I had to keep asking well

>what do I do now and finally he said the first step is to see a specialist

>and discuss hearing aids and have them look over the results further. Then

>we'll need to start speech therapy. So I have my head spinning with

>questions right now and now one to answer them yet. I'm mad at the doctor's

>for making my son go so long before finally granting the request for the

>hearing test making him unable to hear properly months ago. And I'm scared

>for what this may mean for his future and what other's may say and how they

>will treat him.

>

>Well this is definetly longer than I planned, but I just needed to vent and

>also see if anyone out there has any advice or information for me. Also is

>there any way to find out what caused Alek's hearing loss? Like was he born

>with it, was it from meds he was on, the oxygen he was on, missed ear

>infections????

>

>Best wishes,

>

>Tammy

>

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

[Guest guest]

Welcome to the group! I didn't have a chance to write you a personal note

when I subscribed you because I was running late. I'd like to take this

chance to say hi, and how very glad we are to have you with us. I could

spend quite a few volumes just going over some of the questions you asked,

but I'll try to keep this fairly short for now. In the weeks to come I'm

sure you'll learn plenty.

> and I was just " overly concerned " for nothing.

I've heard this one myself way too many times. One sure way for a doctor to

P*ss me off now is for him to tell me this now about anything. The last time

it happened was in the ER and there had been an accident at school (old news

to some on the group). The doc fed my hubby and I this line and my hubby

said, " But you're going to x-ray his arm anyway, aren't you? Would you like

to do it here, or would you like me to take him upstairs and do it up there

and if anything shows up you better be ready to explain to the hospital

commander (Air Force) why you refused to x-ray our son's arm. " The doc

x-rayed it and the arm was broken in 2 places (Hi Orla, how's Piers?)

> So I have my head spinning with

> questions right now and now one to answer them yet.

You've certainly got a lot of folks to answer them for you now, from parents

who have been there. Feel free to ask away!

> I'm mad at the doctor's

> for making my son go so long before finally granting the request for the

> hearing test making him unable to hear properly months ago.

It took us 1 year after we first started mentioning things to the Dr. before

our son's hearing loss was diagnosed 12 years ago. It was without a Dr's

referral, and even after he was diagnosed the Dr's tried to tell us there

was nothing wrong with our son's hearing and we shouldn't listen to the

audiologist (he had a severe loss). I still get upset whenever I think about

it.

> And I'm scared

> for what this may mean for his future and what other's may say and how

they

> will treat him.

You've certainly come to a good place! For the first part of your worries,

read the story I've included below.

> Well this is definetly longer than I planned, but I just needed to vent

This is a great place for venting. We all do it. That's the " support " part

of our list. Sometimes we can't answer questions for you, but we can let you

know that you're not alone, and you don't have to go through this alone.

Think of us as your shoulder to cry on when you need it, your crutch when

you need it, your library, and anything else you may need.

> and

> also see if anyone out there has any advice or information for me. Also

is

> there any way to find out what caused Alek's hearing loss? Like was he

born

> with it, was it from meds he was on, the oxygen he was on, missed ear

> infections????

Sometimes a cause for hearing loss can be found, other times not. I think

the figure for unknown cause of hearing loss is about 50%. As for advice,

the best I can give you comes from Perl Kingsley:

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

Welcome To Holland

http://members.tripod.com/listenup/holland.htm

By Perl Kingsley

I am often asked to describe the experience of raising a child with a

disability - to try to help people who have not shared that unique

experience to understand it, to imagine how it would feel. It's like

this......

When you're going to have a baby, it's like planning a fabulous vacation

trip - to Italy. You buy a bunch of guide books and make your wonderful

plans. The Coliseum. The Michelangelo . The gondolas in Venice. You may

learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your

bags and off you go. Several hours later, the plane lands. The stewardess

comes in and says, " Welcome to Holland. "

" Holland?!? " you say. " What do you mean Holland?? I signed up for Italy! I'm

supposed to be in Italy. All my life I've dreamed of going to Italy. "

But there's been a change in the flight plan. They've landed in Holland and

there you must stay.

The important thing is that they haven't taken you to a horrible,

disgusting, filthy place, full of pestilence, famine and disease. It's just

a different place.

So you must go out and buy new guide books. And you must learn a whole new

language. And you will meet a whole new group of people you would never have

met.

It's just a different place. It's slower-paced than Italy, less flashy than

Italy. But after you've been there for a while and you catch your breath,

you look around.... and you begin to notice that Holland has

windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all

bragging about what a wonderful time they had there. And for the rest of

your life, you will say " Yes, that's where I was supposed to go. That's what

I had planned. "

And the pain of that will never, ever, ever, ever go away... because the

loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to

Italy, you may never be free to enjoy the very special, the very lovely

things ... about Holland.

©1987 by Perl Kingsley. All rights reserved.

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

Always remember, above everything else, you're among friends here!

Kay

listenup@...

Listen Up Web

http://members.tripod.com/listenup/

Never be afraid to try something new. Remember, amateurs built the ark.

Professionals built the Titanic.

[Guest guest]

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