noticing some changes

[handinhand]

I am not liking this month of July very much!!! I am noticing some changes in different places . I was dx with bulbar ALS in Feb. 09.. Everything has been centered around my mouth and neck and shoulders.....My Dr. visit in June was very incouaging as the Dr. said my limbs are still very strong. More progression with speech and swallowing.
I have noticed twitching in my hands and my feet and arms and legs. Also my sides. I notice this at night mostly. I also notice when stretching ,sometimes my toes will lock down and I have to pull them back. Happened with my fingers when I was using a curling iron.. Two fingers locked down and Hurt like H___! I had to pull them back.... I am almost afraid to ask ?? Is this how it starts in the limbs? I am knitter and use my hands soooooooo much.... I am hurrying to try and get items done for my Grand Kids before I can't:-(. I hope that these signs are just that I need to drink more water?????Hugs, Linda

[trfogey]

I am not liking this month of July very much!!! I am noticing some changes in different places . I was dx with bulbar ALS in Feb. 09.. Everything has been centered around my mouth and neck and shoulders.....My Dr. visit in June was very incouaging as the Dr. said my limbs are still very strong. More progression with speech and swallowing.
I have noticed twitching in my hands and my feet and arms and legs. Also my sides. I notice this at night mostly. I also notice when stretching ,sometimes my toes will lock down and I have to pull them back. Happened with my fingers when I was using a curling iron.. Two fingers locked down and Hurt like H___! I had to pull them back.... I am almost afraid to ask ?? Is this how it starts in the limbs? I am knitter and use my hands soooooooo much.... I am hurrying to try and get items done for my Grand Kids before I can't:-(. I hope that these signs are just that I need to drink more water?????Hugs, Linda

Unfortunately, Linda, the description you give of the "two fingers lockdown" is oh so familiar to me. I have had (and still have) similar cramp/spasm episodes in both my hands for a couple of years now. My original problem site was my left hand. Fortunately, it took a while for significant function to be lost in that hand. I was able to type with that hand for nearly a year after the cramping started and was able to do most other things with that hand for nearly two years. I still have most of the use of my right hand, but I only started getting "lockdowns" in that hand about 9 months ago.

[brooksea]

Sorry, but yes. My husband gets the same thing with his fingers, but cannot pull them back by himself. Really unpredictable as to when it will happen. He can just be sitting in his recliner and one of his hands will freeze up into a curl mostly with a couple of fingers.

[Al]

My fingers have been curling up for years. I sit in my chair with my hand as flat as it will go on the arm and push down on them with the forearm of the other hand. I think it's helped keep them straight and useful.

AL.

[MtPockets]

Same here. Noticed the hands curling about two years ago and they have been progressing. There is a a terrible pain in the inside of my forearm when this happens.

Doctor told me to increase my Balcofen. If I increase it anymore I'll be a zombie. I think my wife must have suggested that one to him. Probably trying to keep me from inventing any more weed eatting wheelchair attachments.:D

[rose]

Linda,
It was almost 3 years ago when I had my fingers lock up ~ way before I even had a clue as to what is wrong with me. The past few months I've had the curling too, in fact last night I woke in the night and couldn't uncurl them for a while. I was wondering if I was dreaming, but finally got myself awake enough to know that I wasn't.

Try not to let this cause you undue worry. One thing about knitting and crocheting, is even if fine finger movement gets less exact, for the most part, with this type of craft, its just grasping with fingers and moving the hands, rather than having to use the fingers to do exacting work like having to pick up tiny beads and thread them (am I making sense?). I do understand your sense of urgency, I was a crocheting fool right before Christmas last year, trying to make sure I completed enough projects that were for gifts, but in retrospect I needn't have worried. My fingers just move slower is all.

Also, perhaps you could start trying to bend your fingers back slowly many times a day (like I'd talked about in the thread I started which ended up being my "puppy" thread LOL)

[handinhand]

[QUOTE=trfogey;85309]Unfortunately, Linda, the description you give of the "two fingers lockdown" is oh so familiar to me. I have had (and still have) similar cramp/spasm episodes in both my hands for a couple of years now. My original problem site was my left hand. Fortunately, it took a while for significant function to be lost in that hand. I was able to type with that hand for nearly a year after the cramping started and was able to do most other things with that hand for nearly two years. I still have most of the use of my right hand, but I only started getting "lockdowns" in that h
and about 9 months ago.[/QUOTE


Thanks everyone for your comments....at least I know I should have the function of my hands for a long while...8-) Linda

[Zaphoon]

Linda, I'm sorry to hear you are having such trouble with your hands, especially because you use them in such a creative and giving manner.

Zaphoon

[handinhand]

It helps to have a sounding board and to get such honest and caring responses from people that know and care.. Thanks... L