Old 03-13-2011, 08:42 PM #1 (permalink)
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Default atrophy in pls

how much atrophy does pls'ers get and how quickly? For instance, my hands first started getting cramps about 2 years ago, where anytime I used them like in writing, cutting ect...and they would get stuck in their position and hurt like the dickens. Then I noticed that my dexterity was getting clumbsier. I was dropping things. Then I started getting occasional twitching sometime starting about a year ago. Then they started hurting all the time and itching intensely on occasion, plus everyso often would swell. Then I noticed that I could no longer open jars because if I really pushed it to open it...I would rip up the tendons (and still not open the jar). Then in December a orthopedic doc shows me a dent below my left thumb saying it was atrophy. Within a month of that a dent began to form on the opposite thumb. I can no longer grab a cup using my thumbs. So I have adapted to using the rest of my hand and fingers.

3 days ago I noticed that there were some big divits where my pinky and ring finger knuckles on the back of my hand are. My fingers seem to sort of 'stick' when I bend them at those knuckles but I can still unstick them without any help from my other hand. I can only guess this is atrophy too. The right hand has the same thing happening too but the divits are not as big. The palm on the left is not as 'deep' in the center as the one on the right, and the left has alot more loose skin folds on the palm. Now...from the onset of the actual seeing the 'atrophy' and the more serious weakness its only been 4 months. Does it happen this quickly with PLS?

Just 2 weeks before I head out to the Mayo clinic. I know that they will have answers for me. I guess I am getting a little nerveous about things, although I do try and not think about it. But when I cannot pour juice for my daughter without using both hands to hold the bottle....it gets hard to ignor and not be concerned.
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Old 03-13-2011, 09:12 PM #2 (permalink)
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Default Re: atrophy in pls

Joyce, when did you last have an EMG, and did they do your arms and thumb?
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Old 03-13-2011, 10:46 PM #3 (permalink)
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Default Re: atrophy in pls

he only did between my shoulder and elbow (right only) then moved to my right leg...I do not remember him doing down to my hand but I could be mistaken because what I do remember is searing pain of a cramp in my bicept (I think thats the muscle on the upper arm) that didn't release after he removed the needle. It cramped till we were almost home (an hours drive away from the office). Extremely painful for days afterward.
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Old 03-13-2011, 11:48 PM #4 (permalink)
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Default Re: atrophy in pls

Ouch. That would have been nasty. I take it that all was ok with the test results?

As you probably know any atrophy in PLS would be from lack of use. For those of us that can still use our muscles, very little atrophy would be expected, but if however your spasticity is so bad that you are unable to use a muscle, it will diminish in size. Ever had a cast on for a fracture? I was in a full length cast on my leg many years ago, so when it was removed, I has very little quad muscle left. As soon as I got moving, it very quickly returned.
Only you would know if there are muscles in your hand, that you are either not using, or using very little. That would cause a degree of atrophy. It's a tricky one when you are in a situation like you are Joyce, with no clear diagnosis yet.
Hang in there until that appt at Mayo, try not to get too uptight about symptoms as you have not long to wait now.
I am sure they will repeat the EMG and perhaps find an answer.
Best of luck
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Old 03-14-2011, 12:14 AM #5 (permalink)
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Default Re: atrophy in pls

I know your right about mayo finding an answer. I do try not to stress about it. Just that I really have no other place I can talk about it in much. Today I did alot of work using my hands (which I do just about everyday as I am an artist). My hands hurt so much when I work because of the spasticness that happen when I try and hold a pen or use a mouse. I cannot imagine loosing my artistic ability due to my hands not working. My mind has a very hard time grasping this. I do not know what I will do if I loose them completely. Art/photography has always been my gift to God and his gift to me. All this uncertainty is hard to take at times.

I certainly use my muscles in my hands....I cannot image it be atrophy from lack of use. If anything I over use them! Anyway, thanks for listening.
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Old 03-14-2011, 04:29 AM #6 (permalink)
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Default Re: atrophy in pls

hi joyce.
yep,the description in your first post about your hands starting with problems sounds just like i had.
it was my left that was cramping up but as i am right handed its hard to judge weakness.
i noticed after the cramping started a twitch in the centre of my palm and atrophy,my palm looks hollowed out or sunken in...........take your pick.
i dont really look any more but if do it still twitching away,but after 2yrs the atrophy is still pretty much the same.
had problems with thumb like it was on elastic and had that stiff pulling feeling if i tried to stretch it from my palm, which has atrophy at the base .

i do have atrophy dotted about,shoulders,feet and ankles ect.
ally is correct in pls it is down to disuse but when i looked it up when being concerned about my atrophy it does not necessarily mean a muscle not used at all.
disuse atrophy can develop in a clinically weakened muscle,if a muscle is weak and therefore can not continually perform to its potential it can loose some of that muscle.

i'm not concerned about an emg,i know i dont have als.
after 12yrs and very little progression with atrophy i know i am ok.

try not to worry joyce,i know thats easier said.
i think you mentioned you had problems for some years before being diognosed with pls...............thats good and would be in your favour.
hopefully you will only get good answers at your appointment.

take care.
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Old 03-14-2011, 09:02 AM #7 (permalink)
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Default Re: atrophy in pls

AK;

I find that I get very depressed when I am not eating properly or especially if I am not getting the right amount of sleep. Then my spacicity goes off the charts and I get wobbly and weak.

I can recover if I rest up and sleep well, but it is a scary thing.

Try to get plenty of rest before your upcomming Mayo trip...valium is subtle, but it will let you sleep well.

- Jerry
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Old 03-14-2011, 12:36 PM #8 (permalink)
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Default Re: atrophy in pls

thanks everyone for your responses. I am sorry for my complaints and weakness on dealing with it. All my life I grew up learning to ignor things with my body because that is what I was taught...if you complain you are weak and weakness is shameful (accourding to my parents). This is how I was able to walk around on a broken hip for 6 months before finding out it was broke. Same with the small stroke...I found that one out 1 year after the event. I know that the teaching of my parents were not true...but sometimes I still struggle with that old way of thinking.

There is such a feeling I am having that I could consider it hatred for the events that are happening with my hands. I guess I am throwing a controled tantrum inside...not externally to my family as I do not want to stress them with my concerns. My hands are my livelyhood. They are the tools I use to express my art and alot of my words. I have many many friends that I communicate with my hands (via computer). Its how I do my ministry for my Lord. I know I am not being very encouraging here with you all. I do not know you all that well. Maybe that is what makes it easier for me to dump my emotions here. Because you do not know me. I do not have to be strong with you all.
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Old 03-14-2011, 01:05 PM #9 (permalink)
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Default Re: atrophy in pls

ok...and just like that I am over my pity party. Sorry for venting. I lost myself for a sec there. I read the christian support thread ( http://www.alsforums.com/forum/peopl...tml#post161171) after posting this morning and have now got my focus correct. Thanks for putting up with me!
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Old 03-14-2011, 01:46 PM #10 (permalink)
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Default Re: atrophy in pls

Joyce, love you dear heart. I'm sorry you were given such a bad message from childhood. There is a time to grieve. I think you already know that...You are in my prayers especially right now.
Love,
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Old 03-14-2011, 02:37 PM #11 (permalink)
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Default Re: atrophy in pls

thanks Ann. I had posted since the last post that I had found encouragement from the Christian support thead but for some reason the post is not here. Most likely because I posted the actual link to the post. Figures. I don't know why they have me pegged as a spammer or something. I have been here for quite some time and somewhat active too without spamming. Besides it was a link directly to this forum!
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Old 03-14-2011, 04:00 PM #12 (permalink)
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Default Re: atrophy in pls

its ok to wallow in self pity every now and again..............just so long as you dont make a habit of it
seriously,i think abot pals on here and things like those poor people in newzealand and now japan which is just so horrific beyond belief..............compared to these people i have nothing to wallow about.

i have used a saying for years................it never rains ,it pours.
at the moment i am reading a book........one door away from heaven by dean koontz.
what should i find while reading through a paragraph but a full version of that saying.

when it rains,it pours
and when it pours,the river runs wild
and suddenly were caught up in a flood
but when were in a flood we do not panic
because were too busy swimming.

since the start of the year it been one thing after another in our family........a river.
but this made me smile...whatever makes us stronger.
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Old 03-14-2011, 04:15 PM #13 (permalink)
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Default Re: atrophy in pls

ahhh...there is my post! Thanks to the powers that be.

Caroline you are so right with knowing there are much worse things in this world than what I am going through. I was really saddened this morning at hearing the report of all the bodies on the coastline of Japan. And in perspective of that I do feel bad for complaining of my little problem. It certainly is not a habit for me though to let loose. As the link I posted above, I found comfort in being reminded of who I am in the Lord and that he gives and takes away. I will leave it to him to figure out what he has next for me! Pity parties never make me feel better, but looking with hope of what the Lord has for me does. Not sure how many here can understand my thinking but there it is.
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Old 03-14-2011, 04:27 PM #14 (permalink)
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Default Re: atrophy in pls

I've got the same stuff going on with my hands. I think I should try soaking them in Palmolive dishwashing liquid. Not very fond of this stuff going on, for sure!
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Old 03-14-2011, 06:31 PM #15 (permalink)
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Default Re: atrophy in pls

Oh, Madge uses Palmolive all the time... and it just makes her hands really clean.
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