I do have one question about atrophy...

[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]

Checked your CPK?

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!