Re: howdy/Marfla

[Guest guest]

Marfla, well to our group. It doesn't matter if you have a diagnoses or not

there's much to learn from us. Its a slow progress getting a diagnoses and

like you've said its a process of eliminations of everything else.

I agree with you don't give up your career unless it gets to a point that

you can't keep up with or you getting stressed out because of it. Stress can

do a number on us PLS'ers that and fatigue. So if your employer is willing to

work with you why not!........I found myself dragging myself though the day

just waiting for it to be over with. For me it was a good thing as " Martha "

says. I relaxed and I was able to except my disability more. I don't give

up by any means I'd probably claw my way to move but that's just

me......Everyone has their own road to travel.

You're using the medications that many of us use so if its working stay with

it. You're find we are all different as how this effects us and there is no

real reason as to why. I just keep moving that all I can do..........

For more information please visit our official web site:

_www.sp-foundation.org_ (http://www.sp-foundation.org) . There's loads of

information for you

to read up on. Another one is _http://geocities.com/freyerse/index.html_

(http://geocities.com/freyerse/index.html)

_http://www.synapsepls.org/..............this_

(http://www.synapsepls.org/..............this) is our New letter.

_http://www.rarediseases.org/......._ (http://www.rarediseases.org/.......)

..then click on the Guide for Physician for PLS:

_http://www.rarediseases.org/programs/pls_brochure.html_

(http://www.rarediseases.org/programs/pls_brochure.html)

By the way you're only 2 hours away from me. Flora Brand/St sburg,FL.

[Guest guest]

Thanks for the welcome. I travel to Clearwater/Tampa area for work at times.

Actually I travel throughout Florida. next week in panhandle.

I am lucky to have an employer willing to work with me, allow me to make

adjustments etc..... I am excited that they are in the process of getting me

a new company car. For three years I have had a Honda Civic, which is very

difficult lifting myself out/in. And the way the seats are my legs and hips are

so uncomfortable. I had mentioned this to my boss a while back and then few

weeks suggested if or when they decide to provide a new vehicle (the Honda has

150 thousand miles) if they would consider something like what I drive

personally. A Tucson SUV which is level in getting in/out. The seats are more

level with legs/hips etc.... Now no matter what I drive I am going to hurt,

get stiff if driving over an hour, but the Tucson is much better than the civic.

So I was notified this week they are in the process of getting me a Tucson.

I started this route Jan 2004 and saw several neuros in 2004. LIke already

mentioned MS initial suspected. I stopped seeing neuro's as I found them jerks,

and since I don't fit their textbooks they treated me like I was

emotional/depressed or just trying to get disability. Now mind you I only saw

most of these neuro's one time. One time was one time too many.

So in 2005 i was treated by a rheumatologist that was great. She spent no less

than hour and half each appt. She knew me inside and out. She worked hard on

finding answers. She wouldn't recommend any neuro in the area either, that says

a lot in my book. She sent my records to two neuro's one in Tampa, one in

Houston regarding possibility of Huntington's disease. She never heard back from

either. And she closed her practice, moved out of state Nov 30 2005. So that is

why i ended up going back to a neuro. I needed a specialists, and this neuro is

new to area.

So far at least he is thinking outside the box, and already suggested FSP. He

even told me to get online and research. then let him know what I thought. Not

many neuro or docs would suggest their patients research online, well taht is my

experience from neuro's i have seen.

The meds seem to be helping some. If I sit too long, then i have problems

standing up and taking those first few steps. Mornings are the same. Summer,

or any form of heat same things, actually heat will bring out many sx's and

intensify them.

Recently experiencing emotional lability (I am not depressed right now) just

these spells of crying for no reason. I have had to walk away from work, go

back to hotel under subsides. I saw a psychiatrist yesterday she increased the

wellbutrin I have been on. But I got frustrated as I felt she just saw this

emotional lability as depression and I feel its more than that. One minute

crying for who knows why, next minute just fine. I have been told by neuro's

that this is related to whatever neuro going on pseudobulbar affect or

something. But the psych yesterday just kept saying it was depression. I do

have episodes of depression and will be first one to say im depressed. Will call

my therapist and say I need to come in as Im feeling depressed and itsn't

passing. I am the one taht asked for anti depressants when I feel depression

isn't passing. This emotional lability is different but couldn't get psych to

see it this way. at least that is how i felt. she said come back in a month but

doubt i will as don't believe she and i connected at all.

And these emotional crying spells aren't constant. last episode was last monday

night. nothing since then. doesn't mean won't happen again today or tomorrow

though. just never know.

i apologize for being so long winded, i tend to go over board when sharing

things. sometimes just not sure what to share, then sometimes feel just want to

share everything.

i appreciate the welcome and hope to learn more from everyone.

wishing you well.

marfla

orlando

Be Blessed

Re: howdy/Marfla

Marfla, well to our group. It doesn't matter if you have a diagnoses or not

there's much to learn from us. Its a slow progress getting a diagnoses and

like you've said its a process of eliminations of everything else.

I agree with you don't give up your career unless it gets to a point that

you can't keep up with or you getting stressed out because of it. Stress can

do a number on us PLS'ers that and fatigue. So if your employer is willing

to

work with you why not!........I found myself dragging myself though the day

just waiting for it to be over with. For me it was a good thing as " Martha "

says. I relaxed and I was able to except my disability more. I don't give

up by any means I'd probably claw my way to move but that's just

me......Everyone has their own road to travel.

You're using the medications that many of us use so if its working stay with

it. You're find we are all different as how this effects us and there is no

real reason as to why. I just keep moving that all I can do..........

For more information please visit our official web site:

_www.sp-foundation.org_ (http://www.sp-foundation.org) . There's loads of

information for you

to read up on. Another one is _http://geocities.com/freyerse/index.html_

(http://geocities.com/freyerse/index.html)

_http://www.synapsepls.org/..............this_

(http://www.synapsepls.org/..............this) is our New letter.

_http://www.rarediseases.org/......._ (http://www.rarediseases.org/.......)

..then click on the Guide for Physician for PLS:

_http://www.rarediseases.org/programs/pls_brochure.html_

(http://www.rarediseases.org/programs/pls_brochure.html)

By the way you're only 2 hours away from me. Flora Brand/St sburg,FL.

[Guest guest]

Oh and thanks for the links. I have already been visiting the sp

foundation one. and read the PLS brochure. several of the other

links posted I get sorry no longer available, or page says doesn't

exist etc.....

but i appreciate you sharing

>

> Marfla, well to our group. It doesn't matter if you have a

diagnoses or not

> there's much to learn from us. Its a slow progress getting a

diagnoses and

> like you've said its a process of eliminations of everything

else.

>

> I agree with you don't give up your career unless it gets to a

point that

> you can't keep up with or you getting stressed out because of it.

Stress can

> do a number on us PLS'ers that and fatigue. So if your employer

is willing to

> work with you why not!........I found myself dragging myself

though the day

> just waiting for it to be over with. For me it was a good thing

as " Martha "

> says. I relaxed and I was able to except my disability more. I

don't give

> up by any means I'd probably claw my way to move but that's just

> me......Everyone has their own road to travel.

>

> You're using the medications that many of us use so if its working

stay with

> it. You're find we are all different as how this effects us and

there is no

> real reason as to why. I just keep moving that all I can

do..........

>

> For more information please visit our official web site:

> _www.sp-foundation.org_ (http://www.sp-foundation.org) . There's

loads of information for you

> to read up on. Another one is

_http://geocities.com/freyerse/index.html_

> (http://geocities.com/freyerse/index.html)

>

> _http://www.synapsepls.org/..............this_

> (http://www.synapsepls.org/..............this) is our New letter.

>

> _http://www.rarediseases.org/......._

(http://www.rarediseases.org/.......)

> ..then click on the Guide for Physician for

PLS:

>

_http://www.rarediseases.org/programs/pls_brochure.html_

> (http://www.rarediseases.org/programs/pls_brochure.html)

>

>

> By the way you're only 2 hours away from me. Flora Brand/St

sburg,FL.

>

>

>

>

[Guest guest]

Marfla, those bouts with emotionally liability are common with us. I can

cry at a sentimental commercial at a drop of a hat. The one I really hate is

the uncontrollable laughter factor. We where at a meeting for grandparents to

be class with my daughter and son in law the other night and the speaker

spoke about the delivery. For some reason I started to laugh and I had to

leave

the room. I always sit by the door so I can make a quick exit. I've been

on only one antidepressant and that was zolt, didn't help at all so I got off

of it. I've learn to just live with it . I really should of tried something

else but I hate taking pills.

When I sit to long I get stiff also so that's common . When I'm home I'm up

and down all the time but riding in a car is a bit hard on me. If we're

going on a long trip we make frequent stops to stretch. I find that just

mediating every once in a while is good. Getting out with friends or relatives

and

not closing yourself off from others helps.

Can't remember do you use any kind of aids for walking? Don't apologize for

expressing your feelings, that is what we are here for.

...................Flora

[Guest guest]

Marfla, those bouts with emotionally liability are common with us. I can

cry at a sentimental commercial at a drop of a hat. The one I really hate is

the uncontrollable laughter factor. We where at a meeting for grandparents to

be class with my daughter and son in law the other night and the speaker

spoke about the delivery. For some reason I started to laugh and I had to

leave

the room. I always sit by the door so I can make a quick exit. I've been

on only one antidepressant and that was zolt, didn't help at all so I got off

of it. I've learn to just live with it . I really should of tried something

else but I hate taking pills.

When I sit to long I get stiff also so that's common . When I'm home I'm up

and down all the time but riding in a car is a bit hard on me. If we're

going on a long trip we make frequent stops to stretch. I find that just

mediating every once in a while is good. Getting out with friends or relatives

and

not closing yourself off from others helps.

Can't remember do you use any kind of aids for walking? Don't apologize for

expressing your feelings, that is what we are here for.

...................Flora

[Guest guest]

Marfla, that is great that you can use the forearm crutch it must be easier

then a walker for you. My balance is shot, I'd fall right over if I didn't

have my hand touching something to balance myself. I remember when I first

went to my neurologist he made me stand up and had me balance myself . Well I

started falling forward and all he did was put his finger on my forehead and

I stopped. Funny how your brain can take that one thing and convert it into

your balance mode. I have a power chair for those long outings. I can at

least keep up with the family when we are at places like Disney or just a trip

to the park.

You talked about heat effecting you, some others have experienced the same

thing. For me heat is good on these old bones. Cold weather just freezes me

up so bad I can't move or stop my chin from chattering. ......Flora

[Guest guest]

Marfla, that is great that you can use the forearm crutch it must be easier

then a walker for you. My balance is shot, I'd fall right over if I didn't

have my hand touching something to balance myself. I remember when I first

went to my neurologist he made me stand up and had me balance myself . Well I

started falling forward and all he did was put his finger on my forehead and

I stopped. Funny how your brain can take that one thing and convert it into

your balance mode. I have a power chair for those long outings. I can at

least keep up with the family when we are at places like Disney or just a trip

to the park.

You talked about heat effecting you, some others have experienced the same

thing. For me heat is good on these old bones. Cold weather just freezes me

up so bad I can't move or stop my chin from chattering. ......Flora

[Guest guest]

Thanks Flora

I haven't experienced the laughter so far. just the crying out of nowhere.

Yeah when I am driving/traveling for work I have to stop several times to get

out and stretch. Yet I still am stiff, pain, upon arrival to destination. Or

sitting in meetings now that is so hard. It's not like I can get up walk around

the room, or walk out of meeting etc.... I try moving my legs while sitting,

flexing, changing positions etc.... doesn't help much though.

I use one forearm crutch daily (not in my home though). Somedays I don't feel I

need it but then again I never know when my balance will got into drunken sway,

or my legs will stiffen, spasms, or just give out. Standing in one spot is even

more difficult for me, as I will fall over if I don't have something to lean on

for support. Even sitting in a chair i need one with arms, or leaning against a

wall, table, something for support. Without it within few minutes sitting

without support I am leaning/falling over.

I will use both crutches as needed i.e. longer distances, longer time up/about.

I also have a rollator that I use in cool weather. I can use it a couple hours

but then start the swaying/leaning over even with it. I use a scooter for all

day trips like when going to disney world, sea world etc....

But day to day normally I can get by with one crutch. I started with a cane in

2004, but moved to forearm crutches soon after as i didn't feel stable with a

cane. My arms would like tremor, rock, shake etc... with a cane. The forearm

crutch its like having that piece on my forearm, and my hand on piece is sending

an extra signal to brain that I have support. maybe its my imagination or

justifying using it. but i really believe the arm and hand touching the crutch

makes a difference.

Best wishes to you

marfla

orlando fl

Be Blessed

Re: howdy/Marfla

Marfla, those bouts with emotionally liability are common with us. I can

cry at a sentimental commercial at a drop of a hat. The one I really hate is

the uncontrollable laughter factor. We where at a meeting for grandparents

to

be class with my daughter and son in law the other night and the speaker

spoke about the delivery. For some reason I started to laugh and I had to

leave

the room. I always sit by the door so I can make a quick exit. I've been

on only one antidepressant and that was zolt, didn't help at all so I got off

of it. I've learn to just live with it . I really should of tried something

else but I hate taking pills.

When I sit to long I get stiff also so that's common . When I'm home I'm up

and down all the time but riding in a car is a bit hard on me. If we're

going on a long trip we make frequent stops to stretch. I find that just

mediating every once in a while is good. Getting out with friends or

relatives and

not closing yourself off from others helps.

Can't remember do you use any kind of aids for walking? Don't apologize for

expressing your feelings, that is what we are here for.

..................Flora

[Guest guest]

Thanks Flora

I haven't experienced the laughter so far. just the crying out of nowhere.

Yeah when I am driving/traveling for work I have to stop several times to get

out and stretch. Yet I still am stiff, pain, upon arrival to destination. Or

sitting in meetings now that is so hard. It's not like I can get up walk around

the room, or walk out of meeting etc.... I try moving my legs while sitting,

flexing, changing positions etc.... doesn't help much though.

I use one forearm crutch daily (not in my home though). Somedays I don't feel I

need it but then again I never know when my balance will got into drunken sway,

or my legs will stiffen, spasms, or just give out. Standing in one spot is even

more difficult for me, as I will fall over if I don't have something to lean on

for support. Even sitting in a chair i need one with arms, or leaning against a

wall, table, something for support. Without it within few minutes sitting

without support I am leaning/falling over.

I will use both crutches as needed i.e. longer distances, longer time up/about.

I also have a rollator that I use in cool weather. I can use it a couple hours

but then start the swaying/leaning over even with it. I use a scooter for all

day trips like when going to disney world, sea world etc....

But day to day normally I can get by with one crutch. I started with a cane in

2004, but moved to forearm crutches soon after as i didn't feel stable with a

cane. My arms would like tremor, rock, shake etc... with a cane. The forearm

crutch its like having that piece on my forearm, and my hand on piece is sending

an extra signal to brain that I have support. maybe its my imagination or

justifying using it. but i really believe the arm and hand touching the crutch

makes a difference.

Best wishes to you

marfla

orlando fl

Be Blessed

Re: howdy/Marfla

Marfla, those bouts with emotionally liability are common with us. I can

cry at a sentimental commercial at a drop of a hat. The one I really hate is

the uncontrollable laughter factor. We where at a meeting for grandparents

to

be class with my daughter and son in law the other night and the speaker

spoke about the delivery. For some reason I started to laugh and I had to

leave

the room. I always sit by the door so I can make a quick exit. I've been

on only one antidepressant and that was zolt, didn't help at all so I got off

of it. I've learn to just live with it . I really should of tried something

else but I hate taking pills.

When I sit to long I get stiff also so that's common . When I'm home I'm up

and down all the time but riding in a car is a bit hard on me. If we're

going on a long trip we make frequent stops to stretch. I find that just

mediating every once in a while is good. Getting out with friends or

relatives and

not closing yourself off from others helps.

Can't remember do you use any kind of aids for walking? Don't apologize for

expressing your feelings, that is what we are here for.

..................Flora

[Guest guest]

hey bring your power chair over to disney and i will race you with my scooter

LOL

My balance for sure is worse when tired, hot. interesting the cold normally

hasn't bothered me, but again im new to this (2004) and have noticed that my

legs can have difficulty in the cold, i mean really cold not mildly cool. I

have even had to use my heat this year which i normally don't use it, well maybe

turn it on a couple times in winter to get chill out. but other than that i

normally enjoy cool.

yeah i think the brain is something doctors still dont know much about. they may

think they do but reality is they don't. and esp if you don't meet a textbook

definition or criteria, or tests like MRI's that don't show anything then they

really are at a lost of what is happening to one's body. well thats my opinion

anyway.

speaking of heat good on those bones, last fall i decided to get into the

whirlpool/spa at the hotel i was staying in. well not smart. i got in and it

felt great initially. after a couple minutes though my body temp must have

raised too high (at least for me), i was burning up inside out. so thought

better get out. well when i tried to stand up and walk out, my legs wouldn't

hold me. i couldn't stand up, i couldn't walk, scared the jeebies out of me. i

scooted my backside around the spa seat until got to steps. then scooted

backside up each step until was sitting outside spa on floor. when i finally

cooled down i was able to walk, wobbly but managed to get to room. needless to

say i don't get in the spas anymore.

it is funny how brain converts something into a balance mode, i guess that is

what the forearm piece and hand piece of crutch does for me.

best wishes.

marfla

Be Blessed

Re: howdy/Marfla

Marfla, that is great that you can use the forearm crutch it must be easier

then a walker for you. My balance is shot, I'd fall right over if I didn't

have my hand touching something to balance myself. I remember when I first

went to my neurologist he made me stand up and had me balance myself . Well

I

started falling forward and all he did was put his finger on my forehead and

I stopped. Funny how your brain can take that one thing and convert it into

your balance mode. I have a power chair for those long outings. I can at

least keep up with the family when we are at places like Disney or just a

trip

to the park.

You talked about heat effecting you, some others have experienced the same

thing. For me heat is good on these old bones. Cold weather just freezes me

up so bad I can't move or stop my chin from chattering. ......Flora

[Guest guest]

hey bring your power chair over to disney and i will race you with my scooter

LOL

My balance for sure is worse when tired, hot. interesting the cold normally

hasn't bothered me, but again im new to this (2004) and have noticed that my

legs can have difficulty in the cold, i mean really cold not mildly cool. I

have even had to use my heat this year which i normally don't use it, well maybe

turn it on a couple times in winter to get chill out. but other than that i

normally enjoy cool.

yeah i think the brain is something doctors still dont know much about. they may

think they do but reality is they don't. and esp if you don't meet a textbook

definition or criteria, or tests like MRI's that don't show anything then they

really are at a lost of what is happening to one's body. well thats my opinion

anyway.

speaking of heat good on those bones, last fall i decided to get into the

whirlpool/spa at the hotel i was staying in. well not smart. i got in and it

felt great initially. after a couple minutes though my body temp must have

raised too high (at least for me), i was burning up inside out. so thought

better get out. well when i tried to stand up and walk out, my legs wouldn't

hold me. i couldn't stand up, i couldn't walk, scared the jeebies out of me. i

scooted my backside around the spa seat until got to steps. then scooted

backside up each step until was sitting outside spa on floor. when i finally

cooled down i was able to walk, wobbly but managed to get to room. needless to

say i don't get in the spas anymore.

it is funny how brain converts something into a balance mode, i guess that is

what the forearm piece and hand piece of crutch does for me.

best wishes.

marfla

Be Blessed

Re: howdy/Marfla

Marfla, that is great that you can use the forearm crutch it must be easier

then a walker for you. My balance is shot, I'd fall right over if I didn't

have my hand touching something to balance myself. I remember when I first

went to my neurologist he made me stand up and had me balance myself . Well

I

started falling forward and all he did was put his finger on my forehead and

I stopped. Funny how your brain can take that one thing and convert it into

your balance mode. I have a power chair for those long outings. I can at

least keep up with the family when we are at places like Disney or just a

trip

to the park.

You talked about heat effecting you, some others have experienced the same

thing. For me heat is good on these old bones. Cold weather just freezes me

up so bad I can't move or stop my chin from chattering. ......Flora

[Guest guest]

Marfla, It's me Connie, again. Just want to say that I spelled your (odd)

name wrong. Sorry. Also. see, you are getting replies from PLS'ers already.

Connie

PS I'm a Florida " Snowbird " I have a second home in Arcadia. My first

home is in (too cold) Toms River New Jersey. If you take Hwy 70 to Clearwater,

you pass right by.

[Guest guest]

Hi Neighbor well welcome to the group of people who dont fit in the

box . I live in Ruskin by Sun City Center .Been 6 yrs. for me . Im

60. Been to over 11 Neuros. over 32 Other Drs. Im one of those folks

who beleive weve been Poisoned some way through our food or

enviroment like Parkinsons Patients and Herbicides .One has to

wander if the jerks who made herbicides or Organo Phosphates have

loved ones who have Neurological diseases .It's a proven fact that

Parkinsons is related to Contaminated Water from Herbicides

(ParaQuat) GEO

>

> Thanks for the welcome. I travel to Clearwater/Tampa area for

work at times. Actually I travel throughout Florida. next week in

panhandle.

>

> I am lucky to have an employer willing to work with me, allow me

to make adjustments etc..... I am excited that they are in the

process of getting me a new company car. For three years I have had

a Honda Civic, which is very difficult lifting myself out/in. And

the way the seats are my legs and hips are so uncomfortable. I had

mentioned this to my boss a while back and then few weeks suggested

if or when they decide to provide a new vehicle (the Honda has 150

thousand miles) if they would consider something like what I drive

personally. A Tucson SUV which is level in getting in/out. The seats

are more level with legs/hips etc.... Now no matter what I drive I

am going to hurt, get stiff if driving over an hour, but the Tucson

is much better than the civic. So I was notified this week they are

in the process of getting me a Tucson.

>

> I started this route Jan 2004 and saw several neuros in 2004. LIke

already mentioned MS initial suspected. I stopped seeing neuro's as

I found them jerks, and since I don't fit their textbooks they

treated me like I was emotional/depressed or just trying to get

disability. Now mind you I only saw most of these neuro's one time.

One time was one time too many.

>

> So in 2005 i was treated by a rheumatologist that was great. She

spent no less than hour and half each appt. She knew me inside and

out. She worked hard on finding answers. She wouldn't recommend

any neuro in the area either, that says a lot in my book. She sent

my records to two neuro's one in Tampa, one in Houston regarding

possibility of Huntington's disease. She never heard back from

either. And she closed her practice, moved out of state Nov 30

2005. So that is why i ended up going back to a neuro. I needed a

specialists, and this neuro is new to area.

>

> So far at least he is thinking outside the box, and already

suggested FSP. He even told me to get online and research. then let

him know what I thought. Not many neuro or docs would suggest their

patients research online, well taht is my experience from neuro's i

have seen.

>

> The meds seem to be helping some. If I sit too long, then i have

problems standing up and taking those first few steps. Mornings are

the same. Summer, or any form of heat same things, actually heat

will bring out many sx's and intensify them.

>

> Recently experiencing emotional lability (I am not depressed right

now) just these spells of crying for no reason. I have had to walk

away from work, go back to hotel under subsides. I saw a

psychiatrist yesterday she increased the wellbutrin I have been on.

But I got frustrated as I felt she just saw this emotional lability

as depression and I feel its more than that. One minute crying for

who knows why, next minute just fine. I have been told by neuro's

that this is related to whatever neuro going on pseudobulbar affect

or something. But the psych yesterday just kept saying it was

depression. I do have episodes of depression and will be first one

to say im depressed. Will call my therapist and say I need to come

in as Im feeling depressed and itsn't passing. I am the one taht

asked for anti depressants when I feel depression isn't passing.

This emotional lability is different but couldn't get psych to see

it this way. at least that is how i felt. she said come back in a

month but doubt i will as don't believe she and i connected at all.

>

> And these emotional crying spells aren't constant. last episode

was last monday night. nothing since then. doesn't mean won't

happen again today or tomorrow though. just never know.

>

> i apologize for being so long winded, i tend to go over board when

sharing things. sometimes just not sure what to share, then

sometimes feel just want to share everything.

>

> i appreciate the welcome and hope to learn more from everyone.

>

> wishing you well.

>

> marfla

> orlando

> Be Blessed

>

> Re: howdy/Marfla

>

>

> Marfla, well to our group. It doesn't matter if you have a

diagnoses or not

> there's much to learn from us. Its a slow progress getting a

diagnoses and

> like you've said its a process of eliminations of everything

else.

>

> I agree with you don't give up your career unless it gets to a

point that

> you can't keep up with or you getting stressed out because of

it. Stress can

> do a number on us PLS'ers that and fatigue. So if your

employer is willing to

> work with you why not!........I found myself dragging myself

though the day

> just waiting for it to be over with. For me it was a good

thing as " Martha "

> says. I relaxed and I was able to except my disability more.

I don't give

> up by any means I'd probably claw my way to move but that's

just

> me......Everyone has their own road to travel.

>

> You're using the medications that many of us use so if its

working stay with

> it. You're find we are all different as how this effects us and

there is no

> real reason as to why. I just keep moving that all I can

do..........

>

> For more information please visit our official web site:

> _www.sp-foundation.org_ (http://www.sp-foundation.org) .

There's loads of information for you

> to read up on. Another one is

_http://geocities.com/freyerse/index.html_

> (http://geocities.com/freyerse/index.html)

>

> _http://www.synapsepls.org/..............this_

> (http://www.synapsepls.org/..............this) is our New

letter.

>

> _http://www.rarediseases.org/......._

(http://www.rarediseases.org/.......)

> ..then click on the Guide for Physician for

PLS:

>

_http://www.rarediseases.org/programs/pls_brochure.html_

> (http://www.rarediseases.org/programs/pls_brochure.html)

>

>

> By the way you're only 2 hours away from me. Flora Brand/St

sburg,FL.

>

>

>

>

[Guest guest]

hey Geo

interesting you mentioned pesticides. I just fax to my neuro a couple weeks ago,

about how I grew up on a farm so was around pesticides, all kinds of chemicals

used on a farm. Maybe he will have a thought on this at my next appt with him.

He did ask me at one appointment if i had traveled overseas. Only over seas I

have been is Guam which I spent a month. back in early 80's. he did mention

possibility of picking up some kind of bacteria/virus while there. but he only

said this in passing and hasn't mentioned it again. next thing he was saying he

thought FSP and to go research it.

I'm not familiar with Ruskin (Sun City Center).

I really feel that if a patient doesn't fit a textbook doctors today have

difficulty looking beyond that textbook, and stumped because they haven't or

didn't learn how to get out of textbook. esp with all the fancy tests now

available, doctors rely so much on MRI's, labs, CT's, etc.... maybe they don't

trust their own instincts anymore.

remember the days you went to one doctor that treated everything? you didn't

run to one specialists after another. that one doctor knew all about you, your

family, and actually remembered you at each appt. i feel having to run around

to so many different doctors is part of the problem. no one is looking at whole

picture, only their speciality area. then all those different docs don't

communicate. well they may send a written report but nothing else. so lots of

different docs looking at one area, not whole picture, so no one can ever see

each piece to whole puzzle.

again thanks

marfla

Be Blessed

Re: howdy/Marfla

>

>

> Marfla, well to our group. It doesn't matter if you have a

diagnoses or not

> there's much to learn from us. Its a slow progress getting a

diagnoses and

> like you've said its a process of eliminations of everything

else.

>

> I agree with you don't give up your career unless it gets to a

point that

> you can't keep up with or you getting stressed out because of

it. Stress can

> do a number on us PLS'ers that and fatigue. So if your

employer is willing to

> work with you why not!........I found myself dragging myself

though the day

> just waiting for it to be over with. For me it was a good

thing as " Martha "

> says. I relaxed and I was able to except my disability more.

I don't give

> up by any means I'd probably claw my way to move but that's

just

> me......Everyone has their own road to travel.

>

> You're using the medications that many of us use so if its

working stay with

> it. You're find we are all different as how this effects us and

there is no

> real reason as to why. I just keep moving that all I can

do..........

>

> For more information please visit our official web site:

> _www.sp-foundation.org_ (http://www.sp-foundation.org) .

There's loads of information for you

> to read up on. Another one is

_http://geocities.com/freyerse/index.html_

> (http://geocities.com/freyerse/index.html)

>

> _http://www.synapsepls.org/..............this_

> (http://www.synapsepls.org/..............this) is our New

letter.

>

> _http://www.rarediseases.org/......._

(http://www.rarediseases.org/.......)

> ..then click on the Guide for Physician for

PLS:

>

_http://www.rarediseases.org/programs/pls_brochure.html_

> (http://www.rarediseases.org/programs/pls_brochure.html)

>

>

> By the way you're only 2 hours away from me. Flora Brand/St

sburg,FL.

>

>

>

>

[Guest guest]

Hey snowbird. Hope you are in Florida today and not up north. From seeing the

news its looks bad, and very cold up there.

Don't think I have taken hwy 70. Coming from Orlando usually I4 to 275.

Sometimes i jump over to Hwy 60 I think it's called as then don't have to fight

275 traffic over the bridge. But then again I don't pay much attention to names

of hwy's i just drive LOL

thanks

marfla

Be Blessed

Re: howdy/Marfla

Marfla, It's me Connie, again. Just want to say that I spelled your (odd)

name wrong. Sorry. Also. see, you are getting replies from PLS'ers already.

Connie

PS I'm a Florida " Snowbird " I have a second home in Arcadia. My first

home is in (too cold) Toms River New Jersey. If you take Hwy 70 to

Clearwater,

you pass right by.