Re: Re: Mark-breathing problems in pls

[Guest guest]

Correct me if I am wrong as all this is so confusing, but is the lungs an

UMN? Same as with the swallowing and choking problem. Somewhere I read that if

this area was effected it is called bulbar onset of ALS. Like I said, I might be

wrong. Then I read the ascending and descending PLS. Mine started in the legs

and has slowly crept up but as it did, the legs didn't get worse, per say,

it's just that these spasm have moved up. Does this make sense, cause it doesn't

really to me, it also could be a bad day for trying to explain myself? As it

has moved up, my legs are becoming thinner and very sensitive to touch along

the shin bone. They are stiff in movement but I think that is what keeps me on

them. I tried neurontin (10 days is all) but it only weakened them more. The

spasm got better but the walking got worse, so I stopped. He then prescribed

dilantin but I have yet to fill the prescription. I'm kinda doing the natural

thing as long as I can. Drugs reck havoc on ones liver and kidneys. After

watching my dad die of this from 10 years on all different kinds of drugs, I

think I

will hold off as long as possible.

Lately my shoulders and arms are getting harder to use as the cold makes me

freeze up, tense and hard to relax all the muscles. So long as I am immobile,

no problem, but to use them sends spikes, like a pinched nerve down to my toes

and fingers. I cannot turn head so that my chin even comes parallel to the

shoulders, like maybe half way is all, nor can I tilt my head back. To use these

body parts always feels like I have a pulled muscle or sprain, yet don't.

Again, am I making any sense here.

Actually, this whole disease doesn't make sense.

For Geo, I think that is who is doing a survey, sorry I haven't added, don't

know if I qualify, but here it is;

Age: 47

Hair: Blonde (natural LOL)

Eyes: green

Ancestry: German, Indian

Onset: 2000, legs after last traumatic surgery

DX: Not yet, jury still out

[Guest guest]

Oops;

Occupation: Self Employed, We own a small Culligan Water Dealership, 10 years

now. Before I was a home Mom, now I only work 4 hours a day, my daughter has

moved back home to run the office for me a year ago.

I am right handed.

My brother has ALS. Recently went on vent. He was DX at age 49 in 1996. No

other history is known or has been shared.

[Guest guest]

OOOOOOOH Yah the diaphram wont open the lungs if i walk up stairs i get it .Also

got it with baclofen real bad had to get off it GEO

Re: Mark-breathing problems in pls

,

I have never heard of breathing problems in PLS.

Mark

> Dear Mark,

> Thank you for all your information. You are always so helpful. Are

there the same kind of breathing problems in PLS as in ALS with

exception to the speed of progression? Thanks, Mark!

>

>

>

[Guest guest]

You have to be able to jump through hoops to qualify LOL of course you Qualify

LOL you forgot occupation LH or RH and family history of neuro diseases GEO

Re: Re: Mark-breathing problems in pls

Correct me if I am wrong as all this is so confusing, but is the lungs an

UMN? Same as with the swallowing and choking problem. Somewhere I read that if

this area was effected it is called bulbar onset of ALS. Like I said, I might

be

wrong. Then I read the ascending and descending PLS. Mine started in the legs

and has slowly crept up but as it did, the legs didn't get worse, per say,

it's just that these spasm have moved up. Does this make sense, cause it

doesn't

really to me, it also could be a bad day for trying to explain myself? As it

has moved up, my legs are becoming thinner and very sensitive to touch along

the shin bone. They are stiff in movement but I think that is what keeps me on

them. I tried neurontin (10 days is all) but it only weakened them more. The

spasm got better but the walking got worse, so I stopped. He then prescribed

dilantin but I have yet to fill the prescription. I'm kinda doing the natural

thing as long as I can. Drugs reck havoc on ones liver and kidneys. After

watching my dad die of this from 10 years on all different kinds of drugs, I

think I

will hold off as long as possible.

Lately my shoulders and arms are getting harder to use as the cold makes me

freeze up, tense and hard to relax all the muscles. So long as I am immobile,

no problem, but to use them sends spikes, like a pinched nerve down to my toes

and fingers. I cannot turn head so that my chin even comes parallel to the

shoulders, like maybe half way is all, nor can I tilt my head back. To use

these

body parts always feels like I have a pulled muscle or sprain, yet don't.

Again, am I making any sense here.

Actually, this whole disease doesn't make sense.

For Geo, I think that is who is doing a survey, sorry I haven't added, don't

know if I qualify, but here it is;

Age: 47

Hair: Blonde (natural LOL)

Eyes: green

Ancestry: German, Indian

Onset: 2000, legs after last traumatic surgery

DX: Not yet, jury still out

[Guest guest]

No your wrong we have one called Psuedo Bulbar Palsey asssociated with PLS as

that is what mine has .The EMG is what is going to determine you need to have

one if not already done .Mine started in my speech and has worked down

Re: Re: Mark-breathing problems in pls

Correct me if I am wrong as all this is so confusing, but is the lungs an

UMN? Same as with the swallowing and choking problem. Somewhere I read that if

this area was effected it is called bulbar onset of ALS. Like I said, I might

be

wrong. Then I read the ascending and descending PLS. Mine started in the legs

and has slowly crept up but as it did, the legs didn't get worse, per say,

it's just that these spasm have moved up. Does this make sense, cause it

doesn't

really to me, it also could be a bad day for trying to explain myself? As it

has moved up, my legs are becoming thinner and very sensitive to touch along

the shin bone. They are stiff in movement but I think that is what keeps me on

them. I tried neurontin (10 days is all) but it only weakened them more. The

spasm got better but the walking got worse, so I stopped. He then prescribed

dilantin but I have yet to fill the prescription. I'm kinda doing the natural

thing as long as I can. Drugs reck havoc on ones liver and kidneys. After

watching my dad die of this from 10 years on all different kinds of drugs, I

think I

will hold off as long as possible.

Lately my shoulders and arms are getting harder to use as the cold makes me

freeze up, tense and hard to relax all the muscles. So long as I am immobile,

no problem, but to use them sends spikes, like a pinched nerve down to my toes

and fingers. I cannot turn head so that my chin even comes parallel to the

shoulders, like maybe half way is all, nor can I tilt my head back. To use

these

body parts always feels like I have a pulled muscle or sprain, yet don't.

Again, am I making any sense here.

Actually, this whole disease doesn't make sense.

For Geo, I think that is who is doing a survey, sorry I haven't added, don't

know if I qualify, but here it is;

Age: 47

Hair: Blonde (natural LOL)

Eyes: green

Ancestry: German, Indian

Onset: 2000, legs after last traumatic surgery

DX: Not yet, jury still out

[Guest guest]

I am still confused, just when one thinks they kinda understand, ya really

don't. Probably good I'm not a doctor. Sometimes I'm not even a good patient.

So, the lung is control by a LMN then. The extension cord theory was very

understanding but it didn't pin point what extension cord fed what. Or did I

miss

something?

[Guest guest]

,

You make a lot of sense. I've had PLS since ~1996 and I can relate.

is the lungs an UMN? I'm not sure but believe the diaphragm must have some

muscle that is susceptible to PLS. I started gasping spontaneously about 2 yr

ago and dr at MDA said diaphragm muscles were starting to become spastic and to

focus on breathing deeply when I do have the gasping. Some people here wear a

Bipap (maybe theuy'll tell you the meaning) when they sleep because you end up

with low o2 in the blood if y9ou're not breathing deeply when you sleep.

very sensitive to touch along the shin bone - My lower legs feel like I have

sunburn or shaved too close most of the time. It is worse if I get the least

bit cold and the sensation spreads to my arms and my neuro called it neuropathy

and prescribed neurontin for it. It did not help that but did tremendouse

things for my pain from spasticity in my neck, shoulders, head and legs.

They are stiff in movement but I think that is what keeps me on them. I tried

neurontin (10 days is all) but it only weakened them more. - The muscles were

already weak and the spasticity camoflaged it. Once the neuronting eased the

spasticity, the weakness was apparent. You should go to a PT to help build

some strength in those areas. It is possible in large muscles to get other

living muscle fibers to take over the work of ones that have had their UMN die.

Just don't apush it. I did not start working with my toes soon enough and now 2

on each foot are frozen.

To use these body parts always feels like I have a pulled muscle or sprain, yet

don't - I feel that way too frequently. Most of the time is because I am

exhausted and have not rested. If you are pushing yourself to keep doing the

things you have always done, you will have to accept you cannot. Rest is one of

the really important things you must do.

Hope I helped,

Regards, Sue Ellen

[Guest guest]

Sue Ellen,

Everything you said sounds so familiar.

I asked about PT but he said it would only fatigue them more. I do enough

exercise just doing a normal day, which can get exhausting at time. He did

prescribe speech therapy to help with the swallowing and tongue biting and such

but

have picked up little hint from here and other places so I haven't started as

it is out of my pocket it must come.

I did do the neurontin for 10 days as well and with the same results only it

slowed my breathing as well. I can see a sleep study in the future as I do

have some bad nights and are getting more regular.

We are still in the process of purging and organizing and remodeling for the

future while I still have the ability. Planning for conveyance so if or when

that time does come we aren't stressed by it and can just adept. I hope it's a

logical goal but with this disease, nothing seems logical.

Thanks for everything,

[Guest guest]

Hi guys

Heres what i do for cheek biting .When your eating park some food on the side

opposite that your going to chew on between your cheek and gum this pushes out

the cheek so it does'nt get in the way as the facial muscles are affected as for

the tongue i dont know except maybe slow down on the chewing ?As for the

swallowing i was told by the Speech pathologist to bend the head down when

swallowing or use a straw

Re: Re: Re: Mark-breathing problems in pls

Sue Ellen,

Everything you said sounds so familiar.

I asked about PT but he said it would only fatigue them more. I do enough

exercise just doing a normal day, which can get exhausting at time. He did

prescribe speech therapy to help with the swallowing and tongue biting and

such but

have picked up little hint from here and other places so I haven't started as

it is out of my pocket it must come.

I did do the neurontin for 10 days as well and with the same results only it

slowed my breathing as well. I can see a sleep study in the future as I do

have some bad nights and are getting more regular.

We are still in the process of purging and organizing and remodeling for the

future while I still have the ability. Planning for conveyance so if or when

that time does come we aren't stressed by it and can just adept. I hope it's a

logical goal but with this disease, nothing seems logical.

Thanks for everything,

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

[Guest guest]

Just catching up on mail... , the lung is not a muscle and

therefore not directly affected by PLS or ALS. However, the lungs have air

moved in and out as a result of muscle movement. ALS and its resultant

loss of muscle leaves a person unable to move the chest and diaphragm so

the person can't breathe. PLS problems are more subtle and may include

spasms of the muscles giving rise to unplanned exhalation or interrupting

action of the muscle causing inhalation. Hopefully the PLS symposium will

look at this. Lavon

At 11:16 AM 1/23/2004, you wrote:

>I am still confused, just when one thinks they kinda understand, ya really

>don't. Probably good I'm not a doctor. Sometimes I'm not even a good patient.

>

>So, the lung is control by a LMN then. The extension cord theory was very

>understanding but it didn't pin point what extension cord fed what. Or did

>I miss

>something?

>

>

>

>

>