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.
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.