Old 07-31-2009, 07:50 PM #1 (permalink)
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Default Rapid Arm Movements

Hi,
I was wondering if one of the symptoms of MND was rapid arm movements when startled by a noise eg a phone ringing. You end up spilling drinks, dropping food etc when it happens.

Late last year i was diognosed with PLS after a series of tests for different things.
Previously late in 2007 they thought i had Parkinsons.

I have had symptoms eg a weakining of my left side (arm and leg) for about 4 years now as well as this rapid arm movement when startled (both arms)

Currently i am still walking (authough very slow with the aid of a cane and for longer walks a walker.
The right side is beginning to show some signs of weakness and restricted movement as well now.

Balance is an issue on uneaven grouund.
Breathing and swallowing is currently fine.

I am asking this question because i am visiting the neo. at the end of the week (It is a 800 km round trip for me (500 miles ) )
and would like to know of any other possible causes of my condition as you all know you need to "cover all the bases" with these conditions when you can finally get in to see them.

cheers and thanks in anticipation to your answers (this is a great web site)
Peter
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Old 07-31-2009, 09:44 PM #2 (permalink)
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Default opps forgot a couple of things

Hi, i forgot to say that my speaking has deteriated a bit in the last 6 months to being quiet slow.
people can still understand me but i struggle to have long sentences.
Also i am on Baclofen and Rilutek.
I dont know if either are making any difference but not willing to stop until i see the Neu. later this week.
cheers
Peter
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Old 08-01-2009, 03:58 AM #3 (permalink)
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Default

hi peter,welcome to the forum.
those of us with pls or umn issues know exactly what you are talking about.
with umn desease a startled reflex is very common.
there is also the possibility you have clonus which will magnify when startled.

i also have a shaking like tremor in my lower arms and hands sometimes when holding things,supposed to be due to weakness in the torso/trunk.

funny,the other week i was toasting some bread in the toaster and waiting for it to finish. when it popped out it made me jump so badly i nearly fell over backwards,luckily my son was standing behind me and stopped me from falling.

how long have you had symptoms?
they usually wait 3-5yrs before giving definate diagnosed of pls.
have your emg's been ok? we do have weakness in pls but not to the same extent as als, the weakness is caused by the spasms and is progressive but not completely paralysing.
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Old 08-01-2009, 05:59 PM #4 (permalink)
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Default

Thanks for your comments Caroline,
yes what you discribe re the toaster is me, any unexpected noise will cause me to have a startled reflex like if i am working and someone comes up behind and i dont notice them and they say hi.

My emg's have been normal (so the neuo says)

i probably have had the symptons for app 4 years now.
first picked up when shooting (i am a left handed pistol shooter who for the past 20 years represented the state and once represented the country in shooting).

It was during the training for one of these events i started to notice that i was loosing the fine control needed to shoot well.

Put it down to a muscle strain or somthing, when the symptoms didnt go away and i started to get tired legs after a long day, I started the medical trail to find an answer, app 2 years later (and many visits to the doctors, and several falls) they came up with PLS.

I notice that you have been DX for app 12 months longer thn me?

I was wondering if you are still active, ie walking around ?
the reason for the question is i havent been able to find any one else with PLS in the state and i would like to know how long etc i can expect to be as "active" as i am. (i know every one is different but some guide would be nice)

cheers and thanks
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Old 08-02-2009, 02:12 PM #5 (permalink)
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hi peter.
i started with pls symptoms 10yrs ago now at the tender age of 31.
in the begining it was thought i could have ms but my mri's never showed up anything,then i developed low blood pressure problems and blackouts so multi system atrophy was a possibility.
my last mri was in the begining of 2007 along with genetic testing to finally rule everything out before my diagnosed.

yes i can still walk short distances with a walker.
over the last few years i have slowly developed bulbar symptoms.
there are many old time pls'ers in there 60's and 70's who have had pls 20yrs who can still walk with walkers.
i do know of a couple of aussies with pls .

if you look on the pls forum there are alot of threads with good info,i also posted the spf web site which al made a sticky as this site is regularily updated with the latest news on pls/hsp.
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Old 08-02-2009, 09:31 PM #6 (permalink)
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Default

Hello Peter-

I was just told I have PLS in June....I have arm and leg weakness, hyper reflexes, and problems with my throat. My kids laugh when I am cold and shiver..my arms fly! If I am caught off guard or scared, I do the same thing...

This has been a summer of test, after test. I go see the pulmonary doctor Friday.. I was told last week that my lower esophageal sphincter
is too loose ( WEAK MUSCLE?), and that I have reflux that maybe making my voice sound gravely, and get weak. They suggest surgery?

I still walk, have balance problems. Still talk, but strains by the end of day.. and still laugh...I don't like the alternative
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Old 08-03-2009, 06:08 PM #7 (permalink)
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Default

Thanks Caroline
I have checked out the PLS forum and indeed there is a lot of info on there (there is a lot of info on the whole site) and as importantly some humour.
This is important as i am sure we all get depressed from time to time (i know i do) and to read of others on the web site in a lot worse situation than i am currently but still able to "carry on" on the site is uplifting for me.

icecreamlady (nice name)

you are similar to me re conditions and yes i laugh too as the other option i dont think about.
cheers
Peter
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Old 08-03-2009, 06:47 PM #8 (permalink)
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Default Finally

Thanks Everyone.

The next time I get the urge at work to throw both arms out in front of me and flip the bird with both hands , I have an excuse. Its part of MND ! I wonder if some of those Terrets like symptoms {really colorful language} can blamed on MND also .....


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