Bladder Control &breathing problem

[Guest guest]

Dolores,

You said: "I forgot to add, that the appliance you are speaking of is called a Texas catheter." Not where I come from, Montana, or where I moved to last month, Oregon. I guess we would call them Montana or Oregon catheters.

In your previous response you said that you couldn't understand how any neurologist can say that urinary problems are not a factor in PLS. I, also, can't see how it cannot be somehow associated with PLS.

I have also been told that PLS shouldn't affect breathing. Well, how come I am now on oxygen at night? When I went to the MDA clinic for an evaluation, they confirmed my diagnosis of PLS and recommended that I consult with a Pulmonologist since I have bulbar involvement and am taking immunosuppressive drugs for my arthritis. They said I should discuss my options and wishes in case of an emergency. I have a great deal of trouble coughing, clearing my throat, and bringing up phlegm. I also have some difficulty swallowing and speaking.

The Pulmonologist had me take lung function tests and two sleep tests. My lung function tests revealed that I was below the normal range. The sleep tests revealed that my breathing rate was below normal and I wasn't getting sufficient oxygen. When I asked him for the cause, he just shrugged his shoulders. I believe that PLS is at least a factor in my breathing problem. Since PLS affects, and seems to slow down walking, talking and other functions, why can't it also slow down breathing?

I would appreciate hearing if any of you out there in the PLS world also have breathing problems. I seem to recall that Sonya does.

[Guest guest]

:

I have to disagree again. One of my problems is breathing (thank God I

still am LOL!), but from the onset of my diagnosis, breathing has always

been a problem, especially when it is hot and humid. I live in air

conditioning, and had to retrain myself to breath differently, because

it also had effected the way I spoke and still does. That is why it is

so difficult to compare, we are all effected in many different ways, and

some of these doctor's are just guessing, they just don't know.

Rita

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

,

How are you I hope good. Will my husband has had most of those test done all but the respiratory evacuation? The neor doc that he see's is Dr. Fink the one that is having the talk in Livonia he is out of the university of Michigan hospital. And is doing much research on the illness. Within the first 3 years he was diagnosed with MS Was not until about a year ago that he started seeing DR Fink who then changed the diagnoses to pls. We have also been to the Mayo clinic with no good answers other then probable MS But DR Fink is very good in this field to say the least. My husband has an appointment with him on Mon. as he is having a lot of swelling in his body and is also on a water pill. So don't know ir there is any other doc he could see. Thank you Shirley And we live in Mich.

[Guest guest]

, I too have diminished breathing and I am sure it is PLS progression. I am part of a protocol that is trying to determine if ALS/PLS patients suffer from sleep apnea. I have not received any test results, but I would guess that if breathing is an issue that we go on one of the pneumatic breathing exercisers or else start taking oxygen. That is a question I will be asking both of my neuros. next week. I get anything different, will put it on the website .Ken Auer

Bladder Control & breathing problem

Dolores,

You said: "I forgot to add, that the appliance you are speaking of is called a Texas catheter." Not where I come from, Montana, or where I moved to last month, Oregon. I guess we would call them Montana or Oregon catheters.

In your previous response you said that you couldn't understand how any neurologist can say that urinary problems are not a factor in PLS. I, also, can't see how it cannot be somehow associated with PLS.

I have also been told that PLS shouldn't affect breathing. Well, how come I am now on oxygen at night? When I went to the MDA clinic for an evaluation, they confirmed my diagnosis of PLS and recommended that I consult with a Pulmonologist since I have bulbar involvement and am taking immunosuppressive drugs for my arthritis. They said I should discuss my options and wishes in case of an emergency. I have a great deal of trouble coughing, clearing my throat, and bringing up phlegm. I also have some difficulty swallowing and speaking.

The Pulmonologist had me take lung function tests and two sleep tests. My lung function tests revealed that I was below the normal range. The sleep tests revealed that my breathing rate was below normal and I wasn't getting sufficient oxygen. When I asked him for the cause, he just shrugged his shoulders. I believe that PLS is at least a factor in my breathing problem. Since PLS affects, and seems to slow down walking, talking and other functions, why can't it also slow down breathing?

I would appreciate hearing if any of you out there in the PLS world also have breathing problems. I seem to recall that Sonya does.