Limb Onset ALS - How did it feel in your legs/hands

[Whitetiger]

Can anyone please share how limb onset ALS started for you? Especially how it spread to your hands/arms. Did you feel weak in a couple of fingers? Woke up and whole hand would not work? The feeling in your hands/arms? Had trouble tying your shoes? Trouble w/trying to zip a jacket? The feeling in your leg? Thanks for your reply.

 

[notme]

Whatever I have has not been confirmed--but the first confirmed 'weakness' I had was in my left (dominant) hand. I was unable to push the buttons on my car door locks--or on a spray can. That was followed by atrophy in several muscles in my hand.

Again--they are just 'suspicious' of ALS with me. MRIs of spine show no reasons for my issues, hence, the suspicion of ALS or other neuromuscular process

 

[rmstudier]

Foot drop and difficulty keeping up walking with others.

 

[Whitetiger]

I have noticed difficulty tying my shoes. I went fishing the other day for an hour and had a lot of trouble tying my fishing line on hooks. I was very discouraged because it is something i love to do. Plenty of trouble holding anything in my hands for very long as they are weak. Any of you experience difficulty holding things in your hand? I slur my words a lot when I am tired as well.

 

[SueG]

Whitetiger, your symptoms match my onset. Left-hand uncoordination, noticed in difficulty on the keyboard (like I had to really make an effort to strike each letter) was followed within a few weeks by difficulty tying bows and wrapping bunches with rubber bands (for the farmers market) and slurring of speech when tired. No pain anywhere.
Good luck to you. My son is in Denver, which if I remember right is close by you.
Sue

 

[Ms. Pie]

Mine started in my fingers in my right hand. I couldn't squeez those black binder clips and I used to have no problem doing so before. Then a couple years later I started having trouble walking. I just got my second ALS diagnosis in February after seeing quite a few different doctors and tests. My walking has gotten worse and my left hand is noticabley weaker now. That's it so far for me. My walking has gotten worse in the past 6 months but I'm still getting around pretty well. I use a can occasionally.

 

[Ms. Pie]

For me it's like my ankles are going to cave in if I'm not careful. When I try to button anything or pinch anything it sort of tickles and nothing happens. The muscles just don't work.

 

[Bad Balance]

Left foot drop and diminished balance capabilities.

 

[cukita99]

i started tripping on left foot n then right used cane then walker. then my left hand then right hand. wheelchair then voice. nothing else in 5 yrs

 

[arwaxru]

Dropped things from my right hand, could push a golf tee into the tee box.

 

[StillSteve]

Left hand cramping was first (sometime summer of 2009). Noticed weakness in hand in October of 2009 (couldn't clip fingernails of right hand). G.P. noticed atrophy of left arm and hand during routine physical Feb 2010. Sometime in Feb-Mar 2010 noticed facsiculations for the first time. Lots of tests (four EMGs, two MRIs, blood, urine) before I was given definitive diagnosis of ALS in Feb 2011.

Now, cramping & fascics everywhere. Weaknesses in left leg and right hand are just starting to be noticeable.

S

 

[Steven B]

Well I got put on disability Feb 2010 for a torn Tendon in my Left Ankle and about 6 months later my Podiatrist noticed my Right foot was getting weaker and sent me to a Neurologist. He checked me out by hooking me up to wires and sticking everywhere with a needle and said I had a pinched nerve in my Neck and Back. He sent me to therapy and they started on my back andi I was doing the bike and leg lifts for more than a week and I could feel myself getting stronger. Then they started on my neck by putting me in traction and trying to pull my head off. After about 3 sessions I started getting weaker. In the following weeks my walk was getting worse. By then I was using a walker. I went to my family Dr. and he sent me for an MRI of my spine. Results,,, 5 bulging Discs in my Lumbar spine, 6 in my cervicle spine with 1 partially torn and Dejenatarive Joint Disease. Boy was that a mouth full. Never had pain but all I read about it was if the bulging Disc pushes on 1 side it causes pain. If it pushes on the other side it causes weakness. I never had pain and happy to say I still dont. But it took 6 months to get Diagnosed and now I have an Electric Wheelchair I call my Little Red Chariot. as far as getting dressed, I can still put my shirt on and take it off but that is about it. happy to say I can still work the remote control and open a can of beer. Oh, and I am realy glad to meet you

 

[Whitetiger]

Sue thank you for your input. Aurora is a suburb of Denver.
Steven glad to meet you as well. More beer 4 all!
Just took my youngest son, 8, for ice cream. My right hand was cramping so bad, but it sure was delicious!

Has anyone felt cramping in say a couple of fingers(pinky & ring finger)? Like they don't want to do what they are told?
How about feet cramping up after trying to stand after resting?

Thank you all for your responses. I am keeping all of you in my prayers.

 

[notme]

Cramping is one of my worst problems--it's severe and very very painful. The cramping is in my left hand--where symptoms started, and in my legs.

 

[smwelder]

leg felt heavy, noticed it started to take mor of a effort to get up from sitting. useing a writing pen became harder and penmanship looked diffrent kind of slopy.