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Wonka_Vision

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Hi everyone.

Since the end of June, I've been experiencing some odd muscle problems and would like to get your take on them to determine whether or not I should be worried about ALS.

So, around the end of June, I started feeling kinda funny when I walked. My legs kinda felt stiff, and while there was no problem with my gait, walking felt awkward. When walking, I would get tightness in my upper calfs. Similar to having just gone running, but requiring very little exercise. This would go away upon relaxation and only came up when walking around.
On top of this, the use of either of my hands (say, for typing or using a mouse) would cause muscle pain in the muscles of the hands. There was also some aching in my right eye when viewing a computer monitor or television. During this time, I would have some muscle spasms in my legs at night as well as my hands. There was no loss of strength in any part of my body.

This lasted for about 10 days then completely vanished for another 10 days. Now, the symptoms are back (and have been for about 3 days). Again, my strength is fine and I have no problems with gait. Walking still, however, feels kinda awkward.

I was seen by 3 neurologists in early June for an unrelated (head) matter and was given all of the typical neuro tests (movement of eves and squeezing of fingers and all the other pleasantries). The only thing I found kind of odd at that time was that my right leg did not reflex as readily as my left upon being hit by that hammer-deal.

I am a natural worrier. During the first episode in late June, I was convinced I had MS, a brain tumor, or type 2 diabetes. Should I be worried about the possibility of having ALS?

Thanks a bunch,

Mat
 

MtPockets

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Hi Mat welcome to the forum. I have ALS, I was Dx May 2006 but had symptoms for couple of years before Dx. Weakness from muscle wasting took years to show up in my case. The spasms went on for couple of years maybe 18 months and then the weakness appeared.

It sounds based on my experience that you could have many other things beside ALS going on in your body. I would not jump hurdles to get to ALS so soon or even worry about it at this time.

What would I do? I would find a good ALS clinic in your area and or go see a Neurologist that specializes in treating ALS on a regular basis and have a good physical. There are Soooooooo many tests that have to be run to rule out ALS, that I do not know where to begin. Maybe an EMG or NCS to begin with if you are determined to pursue this and rule out possible ALS.

I hope that helps.
 

timesup

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mtpockets can you describe your muscle spasms for years (does that mean your muscles were contracted?) or always contracting so you had increased muscle tone? were your symptoms onesided?what was your first telltale sign-any muscle wasting? what is the sequence of symptoms?
David
 

MtPockets

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Hi David, My spasms started in my feet. Muscles were jumping slowly at first and every now and then they would cramp in the arch of my feet. I would have have to have someone pull my foot up toward my head to relieve the cramp. The muscle jumping slowly moved up both legs to my calf muscles, then my thighs. Cramping came later. Eventually muscle wasting, weakness began to set in.

By the time I got to a Neurologist and they did an EMG and NCS, the fasciculations, muscle jumping, had moved into my arms, back, and neck. After about 2 years I lost the use of my legs and was in a wheelchair.

The left half of my esophagus is paralyzed, the swallowing points in the back of my throat are almost all gone. I have about 60% lung capacity.

I hope this helps you understand what I went through. However, every one is different in the way in which this disease is manifest and rate at which it spreads. I have what they called Limb Onset ALS.
 
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awieleba

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Hi capt Al,

thanks for sharing. What do you mean by muscle jumping? I get a cramp "feeling" in the arch of my feet on the inside sole. I does not cramp, it just feels like it could or the feeling you get after. Did you have that? or was it always a real cramp? When this happen in your feet did your thighs feel weak?

Thank you in advace

april
 

MtPockets

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I could sit in shorts and see the muscles moving all on their own, all over the place. I would get about 50 or more a minute. It felt at times like I had worms crawling under the skin, kinda looked like it too.

When I would wake in the morning my muscles were all tired because they had been jumping all night. Several times a day they would go into cramps, or as we call them here down South, Charlie Horses.

I hope that helps.
 

olly

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hi capt al.

sorry to but in.
i have had really bad cramping in my left lower leg and foot,i have hypotonia/loss of contraction there.
my arch in my left foot has collapsed since i started with the cramping there over 6mths ago.
i noticed and my son i have loss of muscle in my ankle and top of foot.
my left foot is usually that bit wider than my right,but i have noticed my shoe keeps slobbing off the left foot.
i measured my foot around the area that i think is causing my shoe to slob off,the top of the foot just past the heel. it is over 1/2inch smaller than my right foot now.
it was driving me crazy as people said my shoe may have stretched,but i reasoned my other would have as well.
also there is a slight difference when looking at my left lower leg,a bit thinner and is 1/2inch smaller round the fattest part of the calf.
i am not too concerned at the moment but will check my foot/calf in a few months and see if they are getting thinner.
with the loss of contraction the muscle loss maybe due to this as my leg gets tired and swings back a bit when walking or having to drag it.
hopefully it not lmn involvement itself causing the atrophy,though hypotonia is a lmn sign. don't know if that makes sense to you but it makes me feel better.
take good care
caroline:)
 

awieleba

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hi olly!

can you still go your tip toes? when I do that the muscle defination is sooo different than the other calve. I have the same thing, my left foot/ankle is thinning. it is dented in on the outside of outer ankle like a inch or 2. my calf's have shrunk! my arch is still high, but my heels and feet ache alot. all I know when both calfs flexed the muscle looks diff. I can move my toes only with help of my big toe on the problem leg. note~ I use to be able to move them and I have a hard time pointing my toe like I use to. is that hypotonia?

Is it calf or calve? I guess that I am not smarter than a 5th grader!

april
 

olly

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hi april

hypotonia=loss of the muscles natural ability to contract so it is more floppy and limp.
there are lots of other neurological illnesses were this can occur,it can even happen in an acute umn lesion,but in this case it would return to a spastic hypertonic state.
mine has stayed hypotonic and the leg is getting weaker with slight atrophy of the foot and calf,this may indicate it being lmn lesion/involvement.
i have had bad cramping in my foot for months and when i noticed a difference i showed my pt and she said my arch had collapsed and i need to see someone in orthopedics,i can say the arch collapsing and cramping are connected.
i did used to get alot of fasics in this foot,still get some but not as much.
take care
caroline:)
 

awakinggiant

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Hey Capt Al

Would you consider when one particular muscle jerks or "pops" a fasciculation? I see some of those that fire under my skin but I also have these where they jerk one good time per muscle. Also, have you ever hear of the muscles on your head cramping to the point where it could affect TMJ? Thanks for the help.
 

MtPockets

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Not sure if I could call it a fasciculation, maybe I'm just spastic. :-D
Seriously, I have this happen a lot of times when I least expect it. Like when I am trying to go to sleep and all of a sudden my upper torso will jerk rather violently. Shakes the whole bed and wakes up my wifie.
The actual fasciculations have been going on for years now where I can look at the muscles and see them firing without any conscious movement on my part. The Balcofen has helped slow these down a lot.
I hope this helps?
 

olly

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hi capt al

what you describe in your torso sounds like myoclonus.
i get this,sometimes a limb will jerk/move involentary or my torso with my right side of the body being the worst.
they can be quite violent like you have had an electric shock,i told my neuro it's like when you see a person being revived by the shock paddles they use and there body jumps.
once i had just sat down on the sofa and put a hot cup of tea on the coffee table when i had a myoclonic jerk.
it was like someone invisable had picked me up and thrown me back on the sofa,good job i did not have my hot drink in my hand.
i also get focal reflex clonus in my right knee and the lower leg shoots up in the air.
this happened once on a bus when i was out with my son,the bus had stopped and i was stood up waiting to get off when my right leg shot up in the air.
well obviously i lost my balance and my left leg followed suit,so i end up flat on my back with my legs in the air,good job i had jeans on.
i was a bit sore for a week and i hurt my right hand from getting it trapped under someones seat but mainly embarassed.
take good care
caroline:-D
 

awieleba

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I didnt know myoclonus was that intense. I have it, but it so mild. Maybe it is not? Mine are those ones you get when falling off to sleep. But I am awake, usually when I am holding the baby on my lap, my arm just softly jerks/moves on its own. It happens more when I am in a relaxed state and has gotten better, meaning less and not as intense. Is this the same thing at a lesser degree?

april
 
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