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Re: Re: interferon

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I rec'd my PLS dx in Jan 1998. Although I had symptoms since 1995, you

probably know it takes a while for a neurologist to make this dx. For

the longest time my only difficluties were altered gait, problems with

steps, uneven ground and the startled reflex. I dropped a cup of coffee

at a wedding reception all over my wife's and friends' shoes when a

waiter slammed a door! It freaked my friends out because they hadn't

seen this happen before. Luckily, they were physicians and undestood!

We laughed a good laugh!

But last Sept (99), I had the flu and since then I've had problems with

voice volume and projection. When I get stressed during a conversation

or in a room with lots of background noise, I begin to sound like Marlon

Brando in the godfather. My neurologist told me he had seen this in

othet pts and told me to be on the look out for it. Neverthelss, I went

to an ENT doc (just today) to look at my voicebox, et and he said all is

well. No tumors, polyps or lesions. So, my neurologust and I will

probably attribute the straining of my voice to " spasticity' of my

throat and PLS and how stress affects those of us with PLS. Does

anyone else get a difference in their voice under stress. I mean it

doesn't have to be exceptional stress. My teenage daughter loves it

because I can't yell up the stairs at her to turn down her stereo or

boombox (for the young at heart).

Next week I'll vist a pulmonologist to see if my lungs are okay because

there are time when I've been giving a presentation at work and I seem

to run out of air in the middle of a word or sentence! I don't know the

answers but I'm trying to get some baseline info and hopefully it'll be

helpful to other readers.

Keeping you all in my prayers!

Regards,

Thomson wrote:

>

>

> Yes, please if anyone has had experience with interferon I really

> would like

> to know. I am starting to feel a little discouraged since I'm not

> improving as

> much as one would expect after being off the interferon for 1 1/2 wks.

> I was

> only on it for 2 1/2 wks so would think I'd show some improvement

> daily now.

> When I had the flu and bronchitis in Dec. my voice/speech was affected

> but

> lasted only a week. Prior to that my voice would sound weak or hoarse

> when I

> was tired or talked too much but fine most of the time. For two weeks

> now my

> voice is very weak and the more I try to talk the more it sounds like

> a robot

> with pauses between words. I'm getting good oxygen but am winded

> after any

> activity. I am starting to worry that this is here to stay. Has anyone

> else

> had setbacks with speech after being sick?

>

> Mike, my doctor is wonderful. He also has a very caring staff. I feel

> very

> fortunate to have found them.

>

>

>

> ____________________________________________________________________

> Get your own FREE, personal Netscape WebMail account today at

> http://webmail.netscape.com.

> -----------------------------------------------------------------------

> [

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,your problem is not in the voice box,what is effected is the soft

palate,what happens is the soft palate becomes stiff,when this happens your

speech becomes very garbled and slurred.I have the same problem,or I should

say I had the problem.My speech therapest told me about a palatal lift that

could possibly help my speech,she made an appointment for me at the

Uconn,dental lab.I went there and they ran a gag test on me to see if I could

handle the many fittings, required to make this unit,I passed! It took about

three months to get the finished product but it was well worth the wait.

The prosthesis fits into your mouth like a partial denture,it has a tail on

it that presses against the palate.My speech has improved to about 70% of

what it was before PLS.I wear it all day,take it off at bed time.You should

ask your speech therapist about it.

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Thanks , I'll check into it. Does the soft palate become stiff due

to spasticity?

C828@... wrote:

> From: C828@...

>

> ,your problem is not in the voice box,what is effected is the

> soft

> palate,what happens is the soft palate becomes stiff,when this happens

> your

> speech becomes very garbled and slurred.I have the same problem,or I

> should

> say I had the problem.My speech therapest told me about a palatal lift

> that

> could possibly help my speech,she made an appointment for me at the

> Uconn,dental lab.I went there and they ran a gag test on me to see if

> I could

> handle the many fittings, required to make this unit,I passed! It took

> about

> three months to get the finished product but it was well worth the

> wait.

> The prosthesis fits into your mouth like a partial denture,it has a

> tail on

> it that presses against the palate.My speech has improved to about 70%

> of

> what it was before PLS.I wear it all day,take it off at bed time.You

> should

> ask your speech therapist about it.

> -----------------------------------------------------------------------

> [

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,yes the soft palate does become spastic,which causes the speech to

become garbled and slurred.For several years,after this problem started,and

before I was dx,ed with PLS I was seeing E.N.T'S through CT.and MA.with each

one saying,that the throat was clear of polyps,and the vocal cords were

functioning properly.As I suggested to you see your speech therapist,also you

may want to have your neuro. check your palate.Good luck.,.

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