I do have one question about atrophy...

[lhagsjr]

Is it simply muscles getting smaller? Are dents in your muscles really atrophy? OR is atrophy only the shrinking of muscle. Basically what Im asking is an atrophied muscle just smaller or does it take on a different look?

[patricia1]

My atrophy is dents they dont look smaller just dents Pat

[Jamiet]

Lou,

Everything i've researched is that it is both, dents and just shrinkage. Diff. for diff people

rgds,

jamie

[Al]

Mine are way smaller. Just gone. Not really dents just skin, bone and some fat left in hands and arms.
AL.

[paula B]

I would say i have dents as well as lack of muscles,,,in hands and arms anyway. If i was as talented as Al i could post some pictures. Perhaps i will try and figure out how. Does anyone know about web cams? I have built in one on new computer.

PaulaB

[MtPockets]

I know just what you wanted to hear right?

My son the ER Doctor shared this with me this morning at breakfast. That everyone has the same number of fat cells all their lives, unless they have lipo suction. The only difference is the fat cells get larger or smaller.

Now why couldn't we be blessed with losing the fat cells instead of the muscle cells??

I've lost 20 lbs in past 6 months and almost all of it was leg muscle tissue. My leg muscles are at least 1/2 their size before this mess, but my big fat belly is bigger. :-D:-D:-D:-D Go Figure!

God Bless
Capt AL

[CindyM]

LOL Al, your son coudl have talked all day and not bothered to say that! :-D Cindy

[jimercat]

Whenever I look at my husband's arms that are atrophied, this is my impression:

Somebody put the skinny pubescent arms on the very tall strapping man.

Muscles go and bones stay. (and those fat cells LOL)

[mamaoftwo]

My neuro says he can see the atrophy in my left hand. It is obvious to me and to anyone looking at it. But what I dont understand is that other than the fact that it feels odd (whch is the only way I can describe it), it seems to function pretty well. I can still do everything with it, I think. It is hard because I am right handed and so I have never really noticed what my left hand can and cannot do.
My question is this, how much atrophy does there need to be before the hand loses some motor skills. Can you pretty much lose all of it before there is what might be described as clinical weakness. Or typically, would you expect in ALS for the weakness to precede the atrophy or do they happen simultaneously. I am just confused about this.
My neuro looked at it and said he could see the atrophy but when he strength tested it, his response was "hmmm, strange, you still have good strength in that hand." I think he was as confused as I am! Any insight?

[jimercat]

Look, I don't understand either. My husband still has strength with atrophy. But on last visit his left hand strength was slightly less. His arms are skin and bones, but he still has strength, not a lot, but still there. And also stubbornness.

[myooshka]

That is what I found confusing, as from what I've read it seems some people with als will just go to do something and they will notice their hand is too weak to do it, and others just seem to slowly lose muscle and become weak, it seems to present all different ways. Although I have no diagnosis yet< I am thirty pounds heavier than normal yet because of baby(that's my exuse anyways) my hands are much smaller and the forearms are so skinny. What I was wondering why do they say there is no pain with als when everyone seems to have pain from it. How could you not have pain when your muscles are shrinking it throws your whole body out of whack, especially the back.

[MtPockets]

My experience was that I had the muscle spasms first in my legs before actually atrophy. My Doctor explained it to me this way; the muscles that are in spasms are rubbing against themselves and going into solution in the blood stream, there by destroying the muscles. Over a period of time this results in muscle loss and atrophy.

My leg muscles began to get weaker after a period of about 6 months of spasms. At least noticeable spasms that I could see on the surface and noticeable weakness. They may have been doing that longer and I just did not notice?

Maybe this is not the case with everyone else? It seems there are so many variations with this disease.

God Bless
Capt AL

[Icanmanz]

Is it simply muscles getting smaller? Are dents in your muscles really atrophy? OR is atrophy only the shrinking of muscle. Basically what Im asking is an atrophied muscle just smaller or does it take on a different look?

Hi, Ihag! This is what I have heard about atrophy. When a motor neuron is diseased, it no longer can control its motor unit. This process is called "denervation." Muscle fibers that are denervated lose their ability to contract, and therefore, waste and shrink. This process is called "denervation atrophy." Once muscle fibers are denervated, nerve fibers that belong to healthy motor neurons develop "sprouts" and take over the neural control of denervated muscle fibers. This is so bad. My son atrophied pretty bad. May God bless you!


Irma

[ZenArcher]

Atrophy is the complete or partial wasting of a part of the body. The way it presents in ALS is going to depend on what neurons have died. The neurons die and nearby neurons, as Icanmanz says, will attempt to pick up the slack so to speak. The problem is that as time goes on there aren't enough healthy neurons to control all of the muscle tissue. Once this happens any portion of the muscle that isn't connected to a functioning neuron will begin to waste from lack of use. In my case this first presented with the area between the thumb and index finger, the web part, getting thinner and a dent on the outside of my arm when I would bend it near the elbow. So to answer your initial question yes atrophy is just the muscle getting smaller but that doesn't mean that it will be the entire muscle all at once which means dents could be part of it.

[vmd]

Capt. Al:

By spasms, do you mean fasciculations or painful spasms?

Atrophy is difficult to discern. In my case, I can see my forearms are smaller than they were before, but I also have thin arms. Also, how does one differentiate between pathological denting and the muscle definition one has when lifting weights?

[mamaoftwo]

Zen - that is exactly where the majority of the atrophy is in my hand - the web part between thumb and forefinger. There is barely anything there now. The palm of my hand is also flatter.
But still not lost strength in that hand yet. I know the web on the hand atrophy is classic ALS so it scares me so much. But my neuro says that he would expect there to be associated weakeness despite the fact that he can clearly see the atrophy. I just dont know what to think but every time I look at my hand, I feel sick to the pit of my stomach.

[Icanmanz]

Zen - that is exactly where the majority of the atrophy is in my hand - the web part between thumb and forefinger. There is barely anything there now. The palm of my hand is also flatter.
But still not lost strength in that hand yet. I know the web on the hand atrophy is classic ALS so it scares me so much. But my neuro says that he would expect there to be associated weakeness despite the fact that he can clearly see the atrophy. I just dont know what to think but every time I look at my hand, I feel sick to the pit of my stomach.

mama, that is where my son's signs of atrophy started. I'll never forget when he held his hands out, and he showed me the gap between his thumbs and index fingers. It looked like somebody took a knife and cut that portion out, and his hands were thinner, his palms flattened, and then little by little his fingers started to curl a little, that was when he started having problems buttoning his shirts, tying his shoes, sticking a key in the ignition, things like that. It just sickens me every thime I think about it.

Irma

[vmd]

The problem with looking at hand atrophy is that there is so much variation in the appearance of a normal hand. If you do a google image search on hand, you will see various hands that could be thought of as atrophied.

[mamaoftwo]

Ok Irma, now I am really scared!! I guess I know in my heart its a bad sign but I try not to think about it too much.

[myooshka]

I have the curling fingers starting on both hands the pinky and ring finger, yet I am still amazed that I still have quite good use in them. Yes I see how atrophy could be hard for a Dr. who does not know somone, although when it gets to a certain point it is very easy to see.

[MtPockets]

Well, I started with just the fasciculations, then later they turned into what I call Charlie Horses, very painful spasms where you muscle like your calf knots up and someone has to push your foot up towards your body. I usually can't spell fasciculations, so I just say spasms. Meaning jumping muscles, twitching, etc.
I hope that is clearer than mud.:-D
God Bless
Capt AL

Capt. Al:

By spasms, do you mean fasciculations or painful spasms?

Atrophy is difficult to discern. In my case, I can see my forearms are smaller than they were before, but I also have thin arms. Also, how does one differentiate between pathological denting and the muscle definition one has when lifting weights?

[myooshka]

I got such painful cramps in my legs and feet at the beginning, I tried a535 rub, nothing would work. I don't get the cramps anymore just the first few months I got sick, now just tonnes of spasms. Is this common with others or do most peolpe with als have leg cramps all the time?

[Icanmanz]

Ok Irma, now I am really scared!! I guess I know in my heart its a bad sign but I try not to think about it too much.

Sweetie, I am so sorry. I didn't mean to scare you. Just keep praying that it's something else. I wish I knew which other disease other than als causes for your hands to atrophy. Maybe you can do a little research online. I only hope and pray that you do not have it. When are you going back to the doc? How long have you been like this? How did you feel before the atrophy? God bless you, sweetheart.

Irma

[MtPockets]

Myooshka, I know with my limb onset ALS I had hundreds if not thousands of spasms all day and night for over a year before the docs even began to think it might be ALS. I wore shorts into his office one day just so he could see all the jumping. When he checked my cpk, which is creatine phosphokinase, levels they were around 3000, so he put me in the hospital and flushed me with IV's for 4 days.

Here is what webmd.com has to say about this test:

"What Does It Mean if Muscle Enzymes Are High? When muscle enzymes -- creatine phosphokinase (CPK) and aldolase -- are high, it indicates a possible inflammatory muscle disease. Higher levels of CPK from muscle can also be seen after trauma, injections into a muscle, muscle disease due to an underactive thyroid. and while taking certain medications such as cholesterol-lowering statin drugs."

My doctor had to bring the levels down to prevent my kidneys from shutting down. The high cpk levels block the kidney filtration somehow. I had noticed about the same time that I had slowed down on the amount of urine my body was making and after the IV's it went back to normal.

I understand the normal reading for cpk is suppose to be around 600. Mine stays around 1200 since I was DX. I just have to drink a lot of water every day.

You might want to get a blood test to check your cpk levels?

God Bless
Capt AL

[ltr]

Hi Capt. Al - pieces of muscle are actually "floating" around in the blood which makes the ck's high and also blocks the filtration system. Unfortunately, just like every other test with these neuromuscular diseases, they don't always show up. My ck's weren't very elevated, yet my biopsy showed myopathy and my muscles are clearly in trouble. I do wonder, though, why yours were so unbelievably high? It almost seems like something poisoned you (maybe not the word I'm looking for). Maybe your thoughts about the neurontin are right. I sure wish there was a way to prove it. I tried researching for you, but didn't come up with much. Keep digging, maybe something will show up.

[vmd]

One advantage of my atrophy is that I look defined when I look at myself in the mirror. While I do not seem to have lost muscle bulk on my upper body, I see the "denting" people talk about. I have now been able to achieve the ripped look, I could not before! ;)