Concerned/Need Enlightenment

[AndrewFk]

Hello all:

I have been reading this forum for the last couple days. First, I would like to thank the contributors to this board that either have ALS or have had family members affected by the condition. I lack the words to describe the courage that each of you possess.

I hope someone can provide advice about my current experience. For over 6 months I have been experiencing fasciculations. They are not localized, as I have them all over my body. The twitching occurs intermittently, arms, legs, back, head, etc. In addition, I have noticed that my right quadricep and right hamstring have decreased in size significantly. I can bend my right leg, pivot, turn, and move, but it is noticeably weaker than my left. To my knowledge I have not injured my right knee/hamstring/quadricep. The atrophy just started occurring. A few days after Xmas I noticed the dexterity in my right hand change somewhat. I can move all of my fingers, pick up items, close lids on cans, but my right hand is weaker. For example, my right grip is noticeably weaker than my left. Typing is more difficult (this is an area that I have noticed considerable change). My right hand fingers twitch as well. The leg atrophy and hand weakness are on the same side of the body.

After seeing a general physician, autoimmune/creatine panels and various bloodwork came back clear. Yesterday, I received a nerve conduction test on both upper and lower extremities. Results have not yet been received. The doctor administered an EMG of my right arm and right leg only. (I asked him about my left side, and he chose to only to examine the left - "problem side"). After the EMG, he told me "not to worry" no identifiable signs of ALS. Again, the findings have not yet been released to myself or my primary. Overall, I feel like the EMG was conducted without an overall level of sophistication. Needles were not placed on my rear right leg (hamstring). Only a few spots in my arm and right leg were tested.

Should have stated if before, but I am a male, 26 years old, relatively healthy my entire life. However, the right leg atrophy, hand weakness, and fasciculations have me concerned. Could someone who is well versed in MND symptoms please tell me if I am being irrational. Although I think the EMG was clear (no word on the NCS), should I seek out a good neuromuscular clinic for a detailed study? Thought about Duke Neuromuscular.

I hope that I am not being irrational, but am very concerned. Any help would be appreciated.

 

[hopingforcure]

Hello, First let me thank you for a well thought out, not irrational post. I think that it makes much more sense to see things with clear thought, and a pragmatic head. Many things must be ruled out before ALS is ruled in. A clean EMG is a very very encouraging sign, and poinst away from LMN denervation. Have you had any MRI's yet? one of all regions of the spine, as well as a lot of blood work, spinal tap.. Would be a good place to start. How did your clinical exam go? how were your reflexes?, spasicity? overall clinical go. Let us know some more answers. I can say a visit with a good Neuro-muscular clinic, or specialist is never a bad idea. Glad you found us, hope you can get this thing figured out, and on the path to an answer..

 

[sadiemae]

http://www.associatedcontent.com/article/1123833/muscle_twitching_is_it_als_or_anxiety.html?cat=70

 

[Robynnblue]

I'm just curious, did either your general doc or the doc that did the EMG, did they confirm that you do indeed have atrophy in the areas that you are concerned with?

 

[AndrewFk]

Thank you for the responses. I am more concerned about the atrophy in my right leg, quad, and hamstring (and right arm). The fasciculations, whatever they may be, are not driving my concern. My primary stated that muscle appears to be "absent." Whatever that means. He did not specifically use the term atrophy.

I am just concerned that the "muscle loss" and weakness are a precursor to Motor Neuron issues. Is ALS/MND development a gradual process, (slight impairments that ultimately build)? Does a clean EMG absolutely mean that ALS will not result from your symptoms? These are my concerns.

 

[hopingforcure]

The meaning of Atrophy is wasting. If the atrophy were als (lower motor neuron) related it would have shown in the EMG.

 

[trfogey]

Thank you for the responses. I am more concerned about the atrophy in my right leg, quad, and hamstring (and right arm). The fasciculations, whatever they may be, are not driving my concern. My primary stated that muscle appears to be "absent." Whatever that means. He did not specifically use the term atrophy.

You'll pardon us, of course, for wondering why you are here on this board if you are not concerned about your fasciculations. After all it is the combination of fasciculations, weakness, and atrophy that suggests that ALS might be a possibility, isn't it? Otherwise, why here and not a sports medicine information site, for example?

Muscle atrophy and weakness can be caused by non-neurological causes, as anyone who has worn a cast on an arm or leg for a number of weeks can attest. Injuries, reduction in physical activity, pinched nerves in the spine -- also would be possibilities, along with various muscular disorders .

I am just concerned that the "muscle loss" and weakness are a precursor to Motor Neuron issues. Is ALS/MND development a gradual process, (slight impairments that ultimately build)? Does a clean EMG absolutely mean that ALS will not result from your symptoms? These are my concerns.

If an MND is involved in your situation (or anybody's situation, for that matter), the atrophy and weakness would be an effect of the MND, not a precursor for or cause of the MND. Usually, by the time a muscle begins to atrophy because of an MND, it has already become paralyzed. It is the paralysis that causes the atrophy. The muscle can no longer move, so it wastes away from disuse.

Also, fasciculations that occur bodywide before weakness occurs tends to point away from MND as a cause. Fasciculations in the early stages of ALS are usually very mild and limited to a few area. As the disease progresses, the fasciculations spread and become more noticeable.

Yes, an MND is a gradual impairment. It starts in a limited area of the body -- one hand, one foot, or the tongue are the usual places where MNDs first show themselves -- and slowly spreads through the body. Slowly, in this context, usually means over a period of months and years, not days or weeks.

As to the EMG, a clean EMG for you, given the symptoms you have described, would mean that you don't have ALS now and your current symptoms of fasciculations, weakness and atrophy weren't caused by ALS. There is a variant of ALS that does have a clean EMG at the beginning but you have not described having any symptoms consistent with that variant. Odds are that you probably don't have those symptoms, since they would directly conflict with symptoms you have already described.

You are far too early in the diagnostic process to be worrying about a disease as rare as ALS. Cases of ALS in people your age are more rare than things like cancer or brain tumors, but I don't imagine you worry about a tumor every time you get a headache. The best thing you can do for your own peace of mind is to let your doctors do their jobs and figure out what's wrong with you, rather than trying to beat them to the end of the diagnostic road using the poorly organized and often misleading (and sometimes completely false) information floating around on the Internet.

Good luck.

 

[Alyoop]

I am not sure why you think that you have enough EMG knowledge to think that the right level of sophistication was not applied.
The neurophysiologists/ neurologists who perform these tests know what they are doing.nit takes years of exhaustive training to perform these tests. They know which muscles to test after taking a history. If they are finding a clean picture then they do fewer stabs. If they find abnormalities, then it often becomes a lot more extensive. When they found an abnormality in my EMG then it became a very long drawn out affair.

Leave it to the experts and be careful not to be too critical of the skills that they have.

Hope you get some answers soon. Some of us are still waiting after years!