Re:Respiratory problems with PLS

[Guest guest]

Hi Sonja and ,

I met with Dr. Armon on Tuesday and asked him about respiratory problems with PLS. He indicated that he has seen respiratory problems with PLSers that have bulbar involvement and are into the disease about 10 to 15 years. He said he'd actually seen a PLSer that developed breathing problems very early in the disease, within the first few years, so he re-diagnosed that person as ALS. He said the old older you are when you develop PLS, the better your chance of succumbing to something else prior to breathing problems becoming an issue. But in a younger person it is quite likely that breathing will become an issue in their lifetime. Since most are older when they develop PLS, breathing issues are not seen too often.

So in answer to Sonja's question, yes, PLS can evolve into respiratory distress. The time that it takes to evolve would differentiate it from bulbar onset ALS.

Hope this helps.

Also, Dr. Armon strongly suggested I get a flu and pneumonia shot.

[Guest guest]

ThomsonHelp raise money for PLS ResearchVisit www.geocities.com/mdmfoo/pls.html

Re:Respiratory problems with PLS

Hi Sonja and ,

I met with Dr. Armon on Tuesday and asked him about respiratory problems with PLS. He indicated that he has seen respiratory problems with PLSers that have bulbar involvement and are into the disease about 10 to 15 years. He said he'd actually seen a PLSer that developed breathing problems very early in the disease, within the first few years, so he re-diagnosed that person as ALS. He said the old older you are when you develop PLS, the better your chance of succumbing to something else prior to breathing problems becoming an issue. But in a younger person it is quite likely that breathing will become an issue in their lifetime. Since most are older when they develop PLS, breathing issues are not seen too often.

So in answer to Sonja's question, yes, PLS can evolve into respiratory distress. The time that it takes to evolve would differentiate it from bulbar onset ALS.

Hope this helps.

Also, Dr. Armon strongly suggested I get a flu and pneumonia shot.

[Guest guest]

Thanks for your input. I did go back to Mayo to see if I might be getting

ALS do to my breathing and not being able to talk anymore but they still

said PLS which I was very thankful. PLS is the lesser of two evils.I'm

trying to keep as active as I can which is hard as I'm in a motor

wheelchair all the time. I exercise my upper parts three times a day.

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To: egroup PLS-friends <pls-friendsegroups>

Subject: Fw: Re:Respiratory problems with PLS

Date: Friday, November 17, 2000 1:54 PM

Thomson

Help raise money for PLS Research

Visit www.geocities.com/mdmfoo/pls.html

Re:Respiratory problems with PLS

Hi Sonja and ,

I met with Dr. Armon on Tuesday and asked him about respiratory problems

with PLS. He indicated that he has seen respiratory problems with PLSers

that have bulbar involvement and are into the disease about 10 to 15 years.

He said he'd actually seen a PLSer that developed breathing problems very

early in the disease, within the first few years, so he re-diagnosed that

person as ALS. He said the old older you are when you develop PLS, the

better your chance of succumbing to something else prior to breathing

problems becoming an issue. But in a younger person it is quite likely

that breathing will become an issue in their lifetime. Since most are

older when they develop PLS, breathing issues are not seen too often.

So in answer to Sonja's question, yes, PLS can evolve into respiratory

distress. The time that it takes to evolve would differentiate it from

bulbar onset ALS.

Hope this helps.

Also, Dr. Armon strongly suggested I get a flu and pneumonia shot.

[Guest guest]

Dear ,

Although I am very fatigue now, I would like to say you thank you

very much for your taking trouble for me and reply my question about

respiratory problems with PLS. Now, I know why my respiratory

problems are so great. I have these since 4 years but since 2 years

they are markly progress. (I am 28 years old). But with the breathing

machine at night it is much bether. I have also flu shot. (Is that a

shot for influenca?) And the life attitude is very important. It is

not important how long live a person, but what she did make in her

life and what for impressions she did estate (leave?). (Excuse I can

not so good translate my attitude in english!)

Are you ok? Is the check up of your baclofen-pump good?

I told my family doctor about the PLS-group because the last time it

was very difficult and hardly for me. We have here in Switzerland too

groups for differents disorders, but I can not go there because of my

special condition. I told him, that your all are so great and very

helpfull for me. He is relieved.

We are just wating for the correctly diagnose. May and august the

university did make this electrophysiolocigally tests, they had

results. 2 month ago, I did asked my neurologist and he said that he

is convinced about PLS and I can profit from Riluzole but this is a

decision from the university. (I am wondering of this fact because my

neurologist is a very competent and great doctor in Switzerland.) The

chief doctor of rehab wrote two letter to the neurologist for taking

a stand. No answere. My family doctor wrote a letter 2 weeks ago, no

answere. I did make a phone to the secretary of the neurologist. The

answere was: " We would like to write the answere to your family

doctor. No other treatmen like now. No other examinations. " My family

doctor did not received a letter up to now. I am nervous what is here

going? I am feeling, they are not the same opinion. My doctor

said: " Every day is a gift. " The time is going.

thank you, have a good and take care!

I am going to sleep.

Your friend

Sonja

> Hi Sonja and ,

> I met with Dr. Armon on Tuesday and asked him about respiratory

problems with PLS. He indicated that he has seen respiratory

problems with PLSers that have bulbar involvement and are into the

disease about 10 to 15 years. He said he'd actually seen a PLSer

that developed breathing problems very early in the disease, within

the first few years, so he re-diagnosed that person as ALS. He said

the old older you are when you develop PLS, the better your chance of

succumbing to something else prior to breathing problems becoming an

issue. But in a younger person it is quite likely that breathing

will become an issue in their lifetime. Since most are older when

they develop PLS, breathing issues are not seen too often.

> So in answer to Sonja's question, yes, PLS can evolve into

respiratory distress. The time that it takes to evolve would

differentiate it from bulbar onset ALS.

> Hope this helps.

> Also, Dr. Armon strongly suggested I get a flu and pneumonia shot.

>