Progression to lower limbs, feet and legs

[dbach]

Hello All:
I know this might be a question that I won't get a definitive answer for as this disease is so different for each of us. Currently I only am having issues with both hands, but am wondering what to watch for (symptoms) when this does progress to my feet and legs. Here are some of the questions floating around in my head:
1) Does it normally start on the same side that it did with the hands?
2) Will start at the farthest point of the extremity like it did with my hands, (finger)
3) I have heard that tripping is fairly common once the feet are affected
4) Any other comments or feedback would be appreciated.
Thank you,
Darryl

 

[AzBabs]

I'm curious of this also. I'm bulbar onset and having slight problems in my right arm/hand. I'm walking ok, but legs feel heavy & calfs are tight feeling. Hopefully a Pal will respond w more info. Barbara

 

[CathyP]

I had limb onset. Right foot. Started turning ankle sideways then drop foot. Some noticeable weakness up the right leg at that point. Then the left foot started the same thing. Then weakness in my left leg. NO more balance at that point. I couldn't stand up by myself without having to have atleast a finger touching something or I would fall over. Then my right hand started with weak fingers. Now weakness in my right arm.
This probably won't help you much since we are all so different in starting symptoms and progression.

 

[ltbeauti]

My symptoms were only bulbar for years with a little left hand weakness. This is my non-dominant hand. Then I started falling I thought it have been drop foot at first, but it was balance issues. The balance got worse and worse.(more falls ) until I rely on a walker to get around, or a scooter.
My left hand has gotten much weaker now and is sore and stiff a lot. I noticed recently I am having some manual dexterity issues with the left hand. This is the hand that I kept landing on when I fell.

If you notice balance issues or falling, seek help b/c many PALS have serious complications from the result of a fall.

 

[hjlindley]

I can only share with you how my disease progressed. It started in my right dominant hand, then proceeded to my left ankle which he been wobbly since birth. It continues up my left leg so that my calf muscle is now atrophied and my walk is quite strange. I seem to's have some weakness in my hip flexor's as I sort of lumber along rather than a normal walk. It is now moving to my left hand, so it looks like I am going to be still walking like Frankenstein with no hands. My neurologist calls this distal onset. I have no bulbar or diaphragm all issues yet. There is no standard progression or onset because in many respects this is medically a syndrome not a disease. In other words there is no one causal agent such as a bacteria or virus. Please do not think I am lessening the impact of ALS. All of us know the fear of losing a skill a day. About two weeks ago I went to use my jar opener which I normally push with my right arm and hold the jar with my left. What an unpleasant surprise to find out my left hand no longer grip the jar to open it. The only true advice I can give is to distract yourself and not worry about the things we can't change yet. Good luck and were all here for you in this club none of us wants to be a member of.

 

[hangingon1]

With my wife, who was diagnosed in 2009, It started in the right hand, and then her legs begin to give way in the upper leg. She also had foot drop. When those leg muscles gave way, it resulted in some very dangerous falls. She too said her balance was off. She went to therapy thinking that would do some good, but it did not. All it did was tire her out because she had to exert so much mental energy just to do the exercises. Well, it was on to the walker, and then the bed. A total quad. She was a fine lady, that never complained and truly thought that she would walk again one day. A month ago she went down rapidly. Would not eat, choked a lot and had trouble talking. She died 4 days after she had these symptoms. Do not lose hope, I believe that was what kept her alive. More that that, she had an abiding faith in the Lord Jesus that she would see Him and be with Him in eternity. He promised us that if we believe!

 

[dbach]

Thank you to all that have responded. I found it interesting that hjlindley said it started in the right hand then progressed to the left foot. I always wondered if it would be common to start in the feet on the same side it started with the hands.
It's also nice to know that we are here to support and help each other, God knows we need somewhere to turn to for answers and support.
Darryl

 

[jpsteeler99]

Mine started when I would wake up in the morning. On my way to the bathroom my legs would stiffen up and lock in place for a about 2-3 seconds and then everything was normal. I didn't think much of it for months and it didn't happen every morning. Foot drop and tripping over carpet edges was next. It was mainly in my left foot. It has since moved to the right a little. Now the morning leg lock is every day and it is as soon as I stand up out of bed. I walk like a tin man on bad days. Some days are better than others. When I get nervous, anxious or cold my legs get really stiff and it becomes very difficult to walk. My symptoms started in my legs almost a year before I went to see the neuro for the first time.

 

[CGARS]

jpsteeler99 is pretty close to my experience. Tin man is exactly it, especially during night time/mornings

My legs seem more stiff and lock up more near the hips.
If I walk around much, the legs get tired quickly.

Going up the stairs isn't too bad, but going down with some balance/co-ordination issues is tougher as it seems the knees are taking the weight.

Darryl,
Get your D r to sign off on your accessible parking pass as soon as you can, even if you don't need it yet.
I got mine in June, I didn't need it, but in Ontario if you have one, you don't need a fishing license!
Weird eh?


Good luck.
Casey