Shrinking Leg, very irritated – ALS?

[JackRules88]

Hi all, I thought I would grab your guys opinion on my most recent unwelcome circumstances. For the past year and a half now my body has been twitching everywhere. Mostly, occurring in my calf, but like I said before, it happens everywhere.

I’ve been on the hunt for answers. Went to one nero thought it was stress, gave me three powerful meds after I told him it was having no effect on me each and every time.
About a few months ago I received an EMG and passed it. The guy giving the test mumbled about a muscle biopsy being the next test to take in his opinion. The only problem is that it’s expensive and I can’t afford it yet. Im only 21….

Fast forward to today. My left leg has…shrunk I guess you would say. From my knee to my foot is where the problem areas are. My calf is smaller and my overall leg isn’t as nicely toned as the other. Another painful part is beside the pit of my leg where my lower leg connects to my upper, that area seems lacking in muscle. Certain parts of my foot can be painful when I walk on it. Because of this, I cant really walk on my full foot anymore, the only part I seem to walk on is the outer side of my foot, it’s like the arch of my foot has disappeared. For the last couple days I have been bike riding trying to keep it in shape.

I’m very irritated because I know my left leg has change and I’m experiencing these twitches, the only problem is that no one else can really tell the difference. Which would be hard to tell if just glancing at it for now. My family always wants to see proof, and my twitches don’t work like that. Saying that its allergies or some other brush off comment.

So my main question is this, does this sound like ALS or is it one of those muscle atrophy disease problems?

I’m very nervous because ALS has a lot of similar traits to me but I passed my EMG with the Doc saying it looked fine. I have other annoyances that seem to come up but they pale in comparison to the constant twitching. I have full body tingling sensations that are annoying. Lately I at times have this thing with a slight twitch that seems to hamper my breathing or swallowing. When it happens it takes a little work to get through both but then it subsides. Same with swallowing, it’s like a tingling sensation will take over my neck for a few and then it will go away. When I sleep I’ll also have flashing lights occur, but these have not come up in some time. Any thoughts on the issues would really be appreciated.

 

[KANSASTOM]

You passed the EMG, it is not ALS.

 

[hopingforcure]

Your neuro should surely be able to notice atrophy. I cannot see why you think you have als? This is getting crazy..

 

[BethU]

No, this does not sound anything like ALS. Feet do not become too painful to walk on in ALS, and full-body twitching and tingling point AWAY ... far away ... from ALS. Seeing flashing lights as you fall asleep or wake up also has nothing to do with ALS.

You say: My calf is smaller and my overall leg isn’t as nicely toned as the other.

A smaller limb or one "not as nicely toned" is NOT a sign of atrophy or any other symptom of ALS. Many people think that having a leg or arm slightly smaller or larger than the one on the opposite side of their body constitutes atrophy. This is wrong. Almost everybody on earth has some difference in configuration and/or size between their left and right sides. You have just never really looked at your limbs before and compared them.

If you’re concerned about ALS, comparing your right arm or leg to your left tells you nothing. Nada. Zip. It is as meaningless as comparing it to the mailman's arm or leg.

Limbs are composed of a complex of muscles, which do not all diminish at the same time and rate. If you want to “measure” for atrophy, you need to see if the suspect limb or muscle is CHANGING in size or shape over time ... say a six-month period, because most cases of ALS progress slowly but steadily ... not how it compares on any single day to the other side.

In my own experience, atrophy is localized to specific muscles. Just as ALS twitching is localized to specific muscles. My atrophy appears as scoops of missing flesh in various muscles. So one muscle may be diminished but the one next to it is not, and there will be clear demarkation between them. The surface of my arms, hands, and legs show very clear, well-defined, isolated areas of missing muscle.

As HOPING said, any neuro would be able to instantly recognize atrophy. It is visible and very obvious. If no one can see these things but you, it indicates that you really don't know what you're looking for, and you're trying hard to make non-ALS symptoms sound like ALS symptoms.

(I don't know anything about medicine, but I did get an A in "Anatomy for Artists 101" sometime in the last millennium. )

Listen to your neuro, and believe what he/she is telling you. Do whatever tests he/she suggests.

 

[awieleba]

I Know how frustrating this can be. My calfs have shrunk and my emgs are clean. I did have a muscle biopsy that was essentially normal. I know for a FACT that my calfs shrunk. I dont think it would be called atrophy. I use to do pilates and would stand with legs together and feet touching, my calfs always touched. Today there is a good inch between. They are not as toned either, I now exactly what you speak off. In regards to atrophy I do agree that a good neuro would see it and does know what to look for, ALS is not the only muscle dis order that causes this. However, My rhuemy did say that he thought I had atrophy b /w thumb and Index finger, but my als doc is not concerned or rather expressing any conern to me. We may think we have an area of concern and it isnt. I have an area on my outer lower ankle that is scooped out. I showed the neuro and she said that yes it was indented in but that is not an area where muscle is. It is where tendons are and said that since that wasnt an area where muscle is that she wasnt concerned about. So, we never know what exactly they are looking for, but THEY do! My hands have shrank as well as feet. I have been at this for a year and half as well. My feet hurt when I walk too. Lost padding in them. The only thing that may allieve your fears is time. Just do what you can and stay busy. Maybe get the biopsy and see what or if it shows anything.

Take care

april