Re: Sick building syndrome -

[Guest guest]

, was there any pain to give a clue that

it was going on?

--- <toriaquilts@...> wrote:

> THE INFLAMMATION IN THE CNS CAUSES

> DEMYELINATION.

> V.

>

>

[Guest guest]

OH MY GODDDDDDDDDDDDDDDDD, BARB, ARE YOU KIDDING?????!!!!!!!!! I had INTENSE

inflammation/demyelination of my spinal cord, & I thought the pain was going to

kill me...literally. It was unbelievable. The 1-10 pain scale? Honey, forget

that!! It was a FIFTY....AT LEAST! I screamed....other coworkers said they'd

cut their legs off... " cause it couldn't hurt any worse! " I'm totally

demyelinated at the lumbar level of my spinal cord.

V.

Re: [] Re: Sick building syndrome -

, was there any pain to give a clue that

it was going on?

--- <toriaquilts@...> wrote:

> THE INFLAMMATION IN THE CNS CAUSES

> DEMYELINATION.

> V.

>

>

[Guest guest]

Was it constant pain or on and off? I have

intense pain that stops me cold and have to do

'something', massage leg, move around, hold it in

air and is worrying me due to your story.

Article I had was something about demyleination I

wanted you to read. I'll find it.

--- <toriaquilts@...> wrote:

> OH MY GODDDDDDDDDDDDDDDDD, BARB, ARE YOU

> KIDDING?????!!!!!!!!! I had

[Guest guest]

THE PAIN NEVER LEFT--EVEN WITH DEMEROL & PHENERGAN IM & VALIUM ORALLY TO EASE

THE PAIN. ONLY WHEN I WAS STARTED ON HUGEEEEEEE DOSES OF IV STEROIDS (TO

DECREASE SWELLING & DEMYELINATION) DID THE PAIN START TO GO AWAY. I WAS IN THE

HOSPITAL A MONTH, COMING HOME IN A WHEELCHAIR, & IT TOOK MANY MONTHS TO WALK

AGAIN. BELIEVE ME, BARB.....IF YOU HAD THIS, YOU'D KNOWWWWWWWWWW IT!!

I DO WONDER ABOUT YOUR CASE, HOWEVER--TELL ME MORE, OK? DOES YOUR PAIN LAST A

FEW MINS., & THEN CEASE WITH MASSAGE, ETC? I WONDER IF YOU ARE HAVING

SPASTICITY, OR DYSTONIA....FROM CNS DAMAGE. ??

V.

Re: [] Re: Sick building syndrome -

Was it constant pain or on and off? I have

intense pain that stops me cold and have to do

'something', massage leg, move around, hold it in

air and is worrying me due to your story.

Article I had was something about demyleination I

wanted you to read. I'll find it.

--- <toriaquilts@...> wrote:

> OH MY GODDDDDDDDDDDDDDDDD, BARB, ARE YOU

> KIDDING?????!!!!!!!!! I had

[Guest guest]

I have that too. thought I was paralyzed. And when I am asked about the pain

scale I never know what to answer because everything else seems minor.

<toriaquilts@...> wrote: OH MY

GODDDDDDDDDDDDDDDDD, BARB, ARE YOU KIDDING?????!!!!!!!!! I had INTENSE

inflammation/demyelination of my spinal cord, & I thought the pain was going to

kill me...literally. It was unbelievable. The 1-10 pain scale? Honey, forget

that!! It was a FIFTY....AT LEAST! I screamed....other coworkers said they'd

cut their legs off... " cause it couldn't hurt any worse! " I'm totally

demyelinated at the lumbar level of my spinal cord.

V.

Re: [] Re: Sick building syndrome -

, was there any pain to give a clue that

it was going on?

--- <toriaquilts@...> wrote:

> THE INFLAMMATION IN THE CNS CAUSES

> DEMYELINATION.

> V.

>

>

[Guest guest]

OMG, LEIGH----DID U HAVE THE WRAP AROUND PAIN? DESCRIBE IT TO ME, PLEASE? LOSS

OF BOWEL/BLADDER CONTROL, ETC? LOSS OF BALANCE, ETC? AND I WAS PRETTY MUCH

PARALYZED FOR AWHILE--WASN'T SUPPOSED TO WALK AGAIN. TO THIS DAY, MY RT. ANKLE

& TOES , BOWEL & BLADDER, SEXUALITY & BALANCE ARE ALL " PARALYZED. " IT SUCKS.

AS FAR AS THE PAIN I HAVE NOW? I CALL IT MINIMAL, ALTHOUGH IT TRULY

ISN'T....ITS JUST SOOOOOOOOOOOOO MUCH LESS THAN THE INITIAL PAIN, THAT NEARLY

KILLED ME.

V.

Re: [] Re: Sick building syndrome -

, was there any pain to give a clue that

it was going on?

--- <toriaquilts@...> wrote:

> THE INFLAMMATION IN THE CNS CAUSES

> DEMYELINATION.

> V.

>

>

[Guest guest]

,

I've been working on the fungal theory of being

the root of my feeling ill for 2 years now. Two

months ago MAST tests showed I had high

antibodies to 10 of 13 molds, which doctor said

meant my body was fighting these now, not past

immunity. So it's either in the house or in my

body, but house passes air tests even

professional ones with a few exceptions such as

outside porch and attic but have to go up into

attic to get the mold count, it's not apparently

down in house. I'm working on plans for attic

though.

Anyway, STILL don't know WHERE it is and have

trouble getting doctors to really care to find

it. Meanwhile surgery in 2004 found small amount

of cancer accidentally while trying to remove an

ovarian cyst. A little fluid around heart.

Cardiologist noted it but said it is not much, so

don't worry. Lung test spirometer didn't do well

so maybe lung inflamation pulmonary said but I

don't have any congestion. I have big problems

with digestion but get not much attention,

digestive aides, etc..you know the drill, symptom

management.

The newest thing is stabbing pain down my left

leg. Terrible. I couldn't stand it if it was

constant. Sometimes frequent. Sometimes it has

been a month or more since I have had one. It's

more painful than a spasm. I just massage it

since I don't know what else to do. Feels more

like I imagine a pinched nerve would feel. It is

in region of Sciatic nerve so maybe I will look

into that. Now a days I don't know what to do

when I have something developing since doctors

for me have been a total zero at solving a

problem or even trying for that matter.

--- <toriaquilts@...> wrote:

> THE PAIN NEVER LEFT--EVEN WITH DEMEROL &

> PHENERGAN IM & VALIUM ORALLY TO EASE THE PAIN.

> ONLY WHEN I WAS STARTED ON HUGEEEEEEE DOSES OF

> IV STEROIDS (TO DECREASE SWELLING &

> DEMYELINATION) DID THE PAIN START TO GO AWAY.

> I WAS IN THE HOSPITAL A MONTH, COMING HOME IN A

> WHEELCHAIR, & IT TOOK MANY MONTHS TO WALK

> AGAIN. BELIEVE ME, BARB.....IF YOU HAD THIS,

> YOU'D KNOWWWWWWWWWW IT!!

>

> I DO WONDER ABOUT YOUR CASE, HOWEVER--TELL ME

> MORE, OK? DOES YOUR PAIN LAST A FEW MINS., &

> THEN CEASE WITH MASSAGE, ETC? I WONDER IF YOU

> ARE HAVING SPASTICITY, OR DYSTONIA....FROM CNS

> DAMAGE. ??

> V.

> ----- Original Message -----

>

[Guest guest]

i can RELATE, barb!! i've been trying to tell my docs for yearsssssssss that my

illness is from toxic molds. they're NOW listening! :>)

sounds like sciatica in your leg, barb. that's very painful, yes....but not

like my problem. have you tried PT & stretching exercises, maybe? i suggest

consulting a GOOD physical therapist, after you (i hope!) have an MRI to find

out exactly where the pinch, or sciatica is originating from.

i read just recently that mycotoxins cause kidney cancer, & that there is a 10

yr latency period. great!! its been 8.5 yrs since i got desperately ill, & now

i'm having kidney pain.... & thus far (imagine that!) nobody has a diagnosis on

that one. i fear i do, but i'm not a doctor...never was.

take care,

v.

Re: [] Re: Sick building syndrome -

,

I've been working on the fungal theory of being

the root of my feeling ill for 2 years now. Two

months ago MAST tests showed I had high

antibodies to 10 of 13 molds, which doctor said

meant my body was fighting these now, not past

immunity. So it's either in the house or in my

body, but house passes air tests even

professional ones with a few exceptions such as

outside porch and attic but have to go up into

attic to get the mold count, it's not apparently

down in house. I'm working on plans for attic

though.

Anyway, STILL don't know WHERE it is and have

trouble getting doctors to really care to find

it. Meanwhile surgery in 2004 found small amount

of cancer accidentally while trying to remove an

ovarian cyst. A little fluid around heart.

Cardiologist noted it but said it is not much, so

don't worry. Lung test spirometer didn't do well

so maybe lung inflamation pulmonary said but I

don't have any congestion. I have big problems

with digestion but get not much attention,

digestive aides, etc..you know the drill, symptom

management.

The newest thing is stabbing pain down my left

leg. Terrible. I couldn't stand it if it was

constant. Sometimes frequent. Sometimes it has

been a month or more since I have had one. It's

more painful than a spasm. I just massage it

since I don't know what else to do. Feels more

like I imagine a pinched nerve would feel. It is

in region of Sciatic nerve so maybe I will look

into that. Now a days I don't know what to do

when I have something developing since doctors

for me have been a total zero at solving a

problem or even trying for that matter.

--- <toriaquilts@...> wrote:

> THE PAIN NEVER LEFT--EVEN WITH DEMEROL &

> PHENERGAN IM & VALIUM ORALLY TO EASE THE PAIN.

> ONLY WHEN I WAS STARTED ON HUGEEEEEEE DOSES OF

> IV STEROIDS (TO DECREASE SWELLING &

> DEMYELINATION) DID THE PAIN START TO GO AWAY.

> I WAS IN THE HOSPITAL A MONTH, COMING HOME IN A

> WHEELCHAIR, & IT TOOK MANY MONTHS TO WALK

> AGAIN. BELIEVE ME, BARB.....IF YOU HAD THIS,

> YOU'D KNOWWWWWWWWWW IT!!

>

> I DO WONDER ABOUT YOUR CASE, HOWEVER--TELL ME

> MORE, OK? DOES YOUR PAIN LAST A FEW MINS., &

> THEN CEASE WITH MASSAGE, ETC? I WONDER IF YOU

> ARE HAVING SPASTICITY, OR DYSTONIA....FROM CNS

> DAMAGE. ??

> V.

> ----- Original Message -----

>

[Guest guest]

I was frightened when it happened. Lost all control of self. don't know about

balance because I could not move for 2 months. It was awful awful. I still

have pain in my spine and my left leg is numb above the knee and below feels

like a dried out " stump. " I regained control of functions. Saw many doctors

after I could walk. Still afraid pain might return. No morphine, codeine,

darvon, vicodin touched it. As you said, it required steroids and I mean big

doses. wore all flat shoes for 2 years. Now about an inch heel helps for some

reason. doctor said it relieves pressure on my nerves. No wonder I am such a

mess.

<toriaquilts@...> wrote: OMG,

LEIGH----DID U HAVE THE WRAP AROUND PAIN? DESCRIBE IT TO ME, PLEASE? LOSS OF

BOWEL/BLADDER CONTROL, ETC? LOSS OF BALANCE, ETC? AND I WAS PRETTY MUCH

PARALYZED FOR AWHILE--WASN'T SUPPOSED TO WALK AGAIN. TO THIS DAY, MY RT. ANKLE

& TOES , BOWEL & BLADDER, SEXUALITY & BALANCE ARE ALL " PARALYZED. " IT SUCKS.

AS FAR AS THE PAIN I HAVE NOW? I CALL IT MINIMAL, ALTHOUGH IT TRULY

ISN'T....ITS JUST SOOOOOOOOOOOOO MUCH LESS THAN THE INITIAL PAIN, THAT NEARLY

KILLED ME.

V.

Re: [] Re: Sick building syndrome -

, was there any pain to give a clue that

it was going on?

--- <toriaquilts@...> wrote:

> THE INFLAMMATION IN THE CNS CAUSES

> DEMYELINATION.

> V.

>

>

[Guest guest]

Speaking of RSD, I had that or have that. It was in my hand and it

was very painful. Had to have 10 spinal injections and a year of

therapy. I have heard that some get it in the spine and if that

happens can cripple you. Mine started out as a 2 fractured fingers

and developed into RSD. Luckily the doctor discovered it within 3

months because if they don't discover it within the three month

period it can get much worse. My ring finger and pinky don't

straighten out anymore and it still gets painful but not like

before. Don't know if the mold had anything to do with all of it but

I was right in the middle of the mold nightmare when it happened.

>

> > THE PAIN NEVER LEFT--EVEN WITH DEMEROL &

> > PHENERGAN IM & VALIUM ORALLY TO EASE THE PAIN.

> > ONLY WHEN I WAS STARTED ON HUGEEEEEEE DOSES OF

> > IV STEROIDS (TO DECREASE SWELLING &

> > DEMYELINATION) DID THE PAIN START TO GO AWAY.

> > I WAS IN THE HOSPITAL A MONTH, COMING HOME IN A

> > WHEELCHAIR, & IT TOOK MANY MONTHS TO WALK

> > AGAIN. BELIEVE ME, BARB.....IF YOU HAD THIS,

> > YOU'D KNOWWWWWWWWWW IT!!

> >

> > I DO WONDER ABOUT YOUR CASE, HOWEVER--TELL ME

> > MORE, OK? DOES YOUR PAIN LAST A FEW MINS., &

> > THEN CEASE WITH MASSAGE, ETC? I WONDER IF YOU

> > ARE HAVING SPASTICITY, OR DYSTONIA....FROM CNS

> > DAMAGE. ??

> > V.

> > ----- Original Message -----

> >

>

>

>

>

>

[Guest guest]

you MAY have had my illness, which is called transverse myelitis. did u have

MRI's? describe the onset of pain to me.....was it wrap around the body?

Re: [] Re: Sick building syndrome -

, was there any pain to give a clue that

it was going on?

--- <toriaquilts@...> wrote:

> THE INFLAMMATION IN THE CNS CAUSES

> DEMYELINATION.

> V.

>

>

[Guest guest]

,

My neighbor had RSD before she moved into this

mold-infested building 3 years ago, and it has gotten

much worse since she's been here.

According to her, she had it for a long time before

she was properly diagnosed, and she believes the

environment in which she is living, has played a large

part in her declining health.

Barb E.

--- ldelp84227 <ldelp84227@...> wrote:

> Speaking of RSD, I had that or have that. It was in

> my hand and it

> was very painful. Had to have 10 spinal injections

> and a year of

> therapy. I have heard that some get it in the spine

> and if that

> happens can cripple you. Mine started out as a 2

> fractured fingers

> and developed into RSD. Luckily the doctor

> discovered it within 3

> months because if they don't discover it within the

> three month

> period it can get much worse. My ring finger and

> pinky don't

> straighten out anymore and it still gets painful

> but not like

> before. Don't know if the mold had anything to do

> with all of it but

> I was right in the middle of the mold nightmare when

> it happened.

>

>

__________________________________________________

[Guest guest]

,

I'm glad you had a doctor diagnose this quickly. I've dealt with

many individuals that have been afflicted with RSD. We also have a

couple of boardmembers that were diagnosed with RSD after their

exposure. The RSD organization that I had belonged to for a while in

the beginning, several did not make the connection between their

contaminated environment and their illness. Can they prove

mold/mycotoxins caused their illness? Not likely, but that is when

it started. RSD normally occurs after some sort of physical trama.

But then again from what I understand 25% of RSD patients can just

wake up with it one morning, supposedly for no reason. It is another

difficult condition to control and the treatment most of the time is

temporary. One of my dear friends has had it for many years, full

body and does effect the organs. Again obviously the central nervous

system is not working properly. Another horrid condition.

KC

> >

> > > THE PAIN NEVER LEFT--EVEN WITH DEMEROL &

> > > PHENERGAN IM & VALIUM ORALLY TO EASE THE PAIN.

> > > ONLY WHEN I WAS STARTED ON HUGEEEEEEE DOSES OF

> > > IV STEROIDS (TO DECREASE SWELLING &

> > > DEMYELINATION) DID THE PAIN START TO GO AWAY.

> > > I WAS IN THE HOSPITAL A MONTH, COMING HOME IN A

> > > WHEELCHAIR, & IT TOOK MANY MONTHS TO WALK

> > > AGAIN. BELIEVE ME, BARB.....IF YOU HAD THIS,

> > > YOU'D KNOWWWWWWWWWW IT!!

> > >

> > > I DO WONDER ABOUT YOUR CASE, HOWEVER--TELL ME

> > > MORE, OK? DOES YOUR PAIN LAST A FEW MINS., &

> > > THEN CEASE WITH MASSAGE, ETC? I WONDER IF YOU

> > > ARE HAVING SPASTICITY, OR DYSTONIA....FROM CNS

> > > DAMAGE. ??

> > > V.

> > > ----- Original Message -----

> > >

> >

> >

> >

> >

> >