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denisew

New member
Joined
Jun 26, 2008
Messages
1
Reason
Learn about ALS
Diagnosis
07/2010
Country
AUS
State
NSW
City
Central Coast
Hi to all,
I am Denise, thought to have MS,was ruled out.Specialist ordered MRI,Blood, Spinal Tap, all OK. On the second needle test just said you have MND,asked which one as I like to organise things, I was not frightened about which one it was. I can barely stand, balance has gone on holidays, cannot lift feet, weaker in arms can only lift 2 plates, cramps have left home. Why can I move my legs when I am sitting, uncomfortable but can move them yet when standing am glued to ground.I would be grateful if someone could explain it for me.

I had better say that it all started in lower back and left hip, limping, progressed to the most painful cramps down left leg, next it started on right leg.stiffness and heaviness set in , used walker until I was slower than a snail, am now using wheelchair, tire very easily, will fall asleep at the drop of a hat, even while putting spoon to mouth.Could be the drugs, Zoloft, Valium,Rilutek,Baclofen.I rarely go out because Disabled toilets are so hard, you have to push door open, not easy and lets face it you can't take a commode with you, I have a female urinal but what to do if you need to do number 2 ? No wonder my Vitamin D severely low.
I try to do some housework, I can use my Gotcha by putting cleaning cloth in jaws and spraying floor and then going over it to dry.I can put washing on, do a little polishing again using gotcha, just two of these tasks will totally exhaust me, some days just potter around house or go on computer.
Again thankyou for listening and any advice would be greatly appreciated.
 
Denise,

Welcome to the forum but sad for the reason that brought you here.

I'm very sorry to hear you've been diagnosed with MND and to hear of how it has so adversely effected you at this point. I'm wondering if you have family to lend you a hand with the house cleaning? Is someone there that can assist you getting around?

Just hoping you aren't having to go this alone...
 
Hi Denise,

I am also so sorry... Your onset being up near your trunk (hip) is not as usual as it beginning at the end of the line; the foot. I did have leg onset, beginning with footdrop. We are all so different, never ceases to amaze me. I imagine you're glued to the floor when standing due to bearing weight on your legs, while when seated, there's less force placed on your legs.

Your drug regimen speaks of spasticity, and I know that Valium can cause sleepiness... Spasticity is an Upper Motor problem, Denise. If you read the "PLS Forum", found off the main page, you may find further help, as PLS is totally Upper Motor Neuron. That said, in ALS we do indeed have fatigue, but it varies greatly from one person to the next. I do think the PLS area as well as the ALS areas might be helpful for you to read.

Ann
 
Hello from another Aussie Denise!
Wishing you well with your journey to learn and cope with all the obstacles. As Ann said, there is a whole lot of reading here that will be invaluable.

Roderick.
 
Hi Denise, We have a few things in common unfortunately only one is something nice (where we live) the others are mnd (boooo!) and I too have stared at my leg whilst standing and wondered why the hell it won't move at certain times, thankfully after three years I've taught myself only to answer questions that I have a chance of solving like your one, otherwise we'd all go silly and lose the only thing we still have full control of. I love that you are still trying to do chores but as previously stated by the others I hope it's out of stubbornness and not necessity. Anyway it's good to see you here (I'm a relatively new poster myself).
D.
 
Hi Denise, another Aussie here from the southern highlands. My advise is to reach out to MND NSW as they are a tremendous help. Let me know if you need any details. My parents are on the central coast it's a nice part of the world. I am only fairly new here but there are many nice and supportive people and plenty of useful advise
 
Hi Denise,
Let's make it 4 Aussies in a row.
Others here have given you great info, so all I will do is to say welcome to the forum and to all the aussies if you want to let others know where you live, go to the thread " keeping track of who is from where " do a post and then Barry will " pin" you.
It will be great to see more Aussies on the map.

Cheers
Peter
 
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