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New member
Jul 13, 2007
Foster City
My name is Phil. A new member and welcome the chance to express myself and have the opportunity to learn from others in this community.
I am a 50 year old male who began experiencing right calf twitching about 6 weeks ago. Went to both to my primary doctor and to orthopedist and both said no worry. Self-referred myself to a neurologist who gave me the physical exam which I passed with no problem. Decided to schedule me for an EMG just to cover all the bases. Passed the NVC group, but on the EMG, the right calf area showed no nerve connection. He then checked over the other calf(mild nerve loss, but no concern) arms and hand. All were normal. When I asked him if I had ALS, he said it was a strong possibility and to come back in 4-6 months for a follow-up EMG. If there was any changes in my body to contact him before that time. Well, since then, things have been very difficult. Thinking the worst, and knowing that the mind can drive you crazy, I now see twitching in my left calf, feel tightness in my neck and arm, and pins and needles in my face. Since the EMG, which was only a few days ago, nothing has changed physically- lift weights, run 3-6 miles a day, everything normal- but mentally I am consumed with the worst and wait each day for the next bad sign of the disease. I have made an appointment with an ALS Clinic in the area for next month,just don't no how to get over these dreaded thoughts. So apologize for my expressions on this post, and know that others are having much more difficulty than I am, but do appreciate any help or words of wisdom. Thank you so much, Phil.
Hey Phil. Most of us have been there done that type of thing. I'd go to your GP and get some anti anxiety meds. No point in being stressed while you wait.
Thank you For The Support

Thank you so much for your kind words. On my EMG, the neurologist said that the loss of nerve connection in my right calf(on the EMG sounds like an engine that is trying to start but cannot) coupled with fibrillations of the muscles indicted this was "pathological" in nature and could not be explained. Apologize if my exact recall is a bit off. This led him to conclude the ALS was a strong possibility. My positive thought is that there are many good signs as far as the diagnosis goes, but hard to be told that just to come back in a few months without some support or the fact that something else might be causing this problem. Again thank you for letting me express my thoughts, it is so helpful, Phil.
Phil - many of us have been worried to death, so we all know what a horrible feeling that is. Please don't apologize for your expressions, with all our disabilities on this forum, we are still all equal! I think the best thing you have done for yourself is being the advocate that you are. You scheduled your own appts. and the best place for you to get a clear diagnosis is an ALS Clinic. There are so many things the doc needs to check for before throwing out ALS to you, so try to keep that in mind. Please don't over exert yourself with weights and such until you get this straightened out. That's just my personal opinion because it's obvious your muscles are irritated for some reason. We all hope for the best for you. ~Leslie

Your headed in the right direction as far as being your own advocate and doc. The ALS clinic is the place to be. Please keep in mind, that fibrillations, while not a good sign, can be caused by myopathies also.

Have you experienced any weakness or twitching in other places? What about cramps?

Gsome anti anxiety meds. Wellbutrin worked for me, it made me focus on living, not dying....

Please ask all the questions you want, we are all well versed on ALS. I have a very good article on EMG findings and intrepretations, PM me and i'll email it to you if you want it.


Carpe Diem


Take some of the advice given here to heart. Seize the day, like it was your last. It is not easy to ignore what you are experiencing. However, try to use it as inspiration. I know, this sounds odd, but think about it. If we lived our lives like every day, every hour, every minute was important...we would lead happier lives.

I am in your shoes, I understand. I will pray for you. Positive thinking, try your best. I have not tried meds, however, it is an option that I will use last. In the meantine, hang in there. Email me if you need to chat.


[email protected]
Hi Phi and welcome to the forum. WHen you go back in 4 months I hope they have good news for you! Cindy
Thank you For kindness and support

Truly amazed for the kindness and support offered here. Despite all the difficulties that many of you must face on a daily basis, time is found to send out words of encouragement to others. Thank you over and over again.
A difficult question: has any one ever had a abnormal EMG and not had ALS? Just wanted to ask to add to my ever growing base of understanding. Thank you, Phil
Yes Phil,

EMG's are not only to diag ALS, they diag muscle inflammatory diseases, nerve disease and motor neuron diseases.

What you have "fibrillations" is denervation, but there are multiple types of issues that can cause fibrillations, such as MFN, myopathy and neuropathies.

What they look for in ALS is signs of upper and lower motor neuron issues. The combination of both in 3 limbs or 2 limbs and bulbar, result in the ALS diag. There must be weakness, atrophy & EMG evidence for the diag. I dont' remember exactly which is upper and lower, but hyperacitve (overactive) reflexes are a sign of ALS. Look up the El Escoral Criteria for ALS diagnoses, you will see what they are looking for.

You only have one of those.

How does your tongue look, feel?

What did he rate your reflexes? Brisk or reduced? That will tell alot of the story for you.

Twitching comes with about 50 different disorders.

Normally, a local neuro won't go to a possible ALS diag that quickly with the minimal signs you have. You need to see a specalist, as local neuros mis diag about 75% of the time from what i've seen.

There have been people here where local neruos said they had abnormal EMG...fibs, etc and only to go to the spec and it's all normal. Look up Paradox threads and read them.

take care, try to ahve a good weekend and get you some meds as we suggest. I was consumed by this for two months. It's not fun, i've been's much better now...meds help you cope. LIve your could get hit by a train tomorrow or run over or get in a wreck and its all over with. You've made it to 50...i would give anything to get there at this piont (i'm 32). You still ahve alot of life left in you...even at 50 with a neuromuscular disorder.

I tried the Wellbutrin and i wished i had gotten on it 5 years made me a different person.

take care buddy


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