EMG/NCS advice

[connorg3]

Hello everyone. I welcome any insight you can provide based on your experience. I appreciate the challenges that providing any advice poses by each one of you and thank each one of you immensely for the help you provide to people earnestly searching for answers. I have read the sticky in advance.

I am a 44 y/o male. At the end of March I came down with some kind of upper respiratory issue. I noticed muscle twitching in my left calf about a week or so later. It quickly became widespread within the following two weeks or so. The left leg is much more active, but everywhere twitches, even my eyelids! I reached out to my GP who advised that I should see a neurologist to get it checked. I saw the neuro at the end of April and had an EMG/NCS performed on May 1.

I am attaching my EMG/NCS. The physician performing it put the needle in incremental spots from my foot to my neck on the right side. The only noticeable abnormality was spontaneous activity (Fib) at C4-C5 and also at L4-S1. The examiner was so quick with putting the needle in and out I recall mentioning how quickly that was. I didn't really pay attention to where he stuck it and didn't feel it too much at all. I verified after the fact that they checked the whole back on the right side, to include lumbar, thoracic, and cervical. I was told they did the whole back and those were the only two problem areas.

Prior, I had a ton of blood work that was normal, including heavy metal due to my prior military career. I was very B12 deficient and had begun taking supplements to correct this in March, so my numbers were good. The only other noticeable symptoms besides the widespread twitching was some severe pain in the middle of my back that is worse some days than others, and I know that MND is a motor, not sensory issue. Additionally, I have some knee buckling and balance issues. However, I realize there is a great chance I am hyper-vigilant because of my concerns of the twitching. No noticeable muscle function failure, just some subjective weakness.

The doctor at my follow up appointment mentioned an abnormal NCS due to diabetes and the aforementioned abnormalities on the EMG, leading to a conclusion of nerve irritation. However, the MRI that was performed didn't show anything that indicating nerve compression and was normal according to the radiologist. When I mentioned this to the neuro, he told me he felt fairly confident that I didn't have an MND, but told me he would like me to go see his former professor who was an ALS specialist at Houston Methodist named Dr. Appel. I have a visit over the computer scheduled for Thursday.

Could anyone provide any opinions related to my circumstance and results. I'm looking to understand what all of this means.

Regards

 

[KarenNWendyn]

Your EMG does not show an ALS pattern. If it were ALS, we’d expect positive sharp waves and fibrillations in multiple muscle groups. You had many muscle groups tested, so yes it was done correctly.

And twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. If you can still do everything you could do previously, you don’t have to worry about ALS.

Dr. Appel is a well-known ALS expert. I’m sure he will reassure you.

 

[connorg3]

Thank you Karen. I truly appreciate your commentary. Could I ask further questions for my own education on the matter? I don't struggle with anxiety myself, but I see from perusing the forums that anxiety seems to be an epidemic. Perhaps answering the following may provide others with clarification to allow them to move on. Also, would it be alright if I posted my follow-up after seeing Dr. Appel? I noticed most people did not post their follow-up, which may put people who are struggling with their anxious minds at ease? (I made key points I hope others notice when viewing my thread that may help them understand if they ignored the sticky, which seems to happen a great deal).

1. Would the expectation be that the EMG would illustrate nerve changes, such as PSWs, Fibs, etc., in tested muscles with muscle twitching in a disease such as ALS? In essence, without EMG evidence of nerve changes in a tested muscle with twitching, there is no issue with that muscle. I know through looking over the forum that many people come here with twitching as the first symptom, have an EMG, and then still don't believe it. If they have an EMG of affected muscles and there is no evidence of nerve changes, both acute and chronic, in those muscles, than it essentially rules out a primary MND, correct? As the sticky noted, by the time twitching occurs the disease process is well underway and nerve changes on an EMG would be obvious to a trained technician. So, in my case above the widespread twitching that appeared suddenly would not be indicative of ALS since the EMG showed no nerve changes in the muscles with the twitches (beyond the lack of atrophy, weakness, functional loss, etc.).

2. Pain, such as that in my spine, would occur only far along in the disease process as the sticky denotes due to atrophy and would also have symptoms of weakness prior to the pain occurring, correct? It is unlikely that a short time after the appearance of muscle twitching that pain would be associated with an MND. Pain occurs well into the disease process.

Thanks so much for your valued assistance.

 

[Nikki J]

Please do post after the visit. It is helpful to all. I find it annoying personally that people don’t once they have disposition from the neuromuscular doctor.

Yes if your emg is normal in a symptomatic area and you have a normal clinical exam then yes ALS is ruled out

and you are also correct about the timing of pain in ALS and its causes

 

[connorg3]

Hello all. I wanted to stop by with an update from my appointment with Dr. Appel. Firstly, I want to say that Dr. Appel and his staff are some of the most knowledgeable and genuinely compassionate people I have ever encountered in a healthcare setting. I am typically pessimistic when someone is advertised as one of their best in a field until I see the evidence first hand, and Dr. Appel is the real deal, period.

He took the time to speak to me about my personal life and my symptoms. The visit was a telemedicine visit because the gentleman is elderly and vital to the MND community. However, we went through a number of functional tests while speaking about my concerns.

He stated he felt that I had some nerve root irritation, as noted on the EMG. I brought up the fact that the MRI somewhat contradicted the EMG results and this is where my concerns arose from. He reassured me that neither and EMG or an MRI is perfect. An MRI checks the structure in a snap shot while the EMG checks the function in a live setting. It is like going to a car dealership and looking and checking a vehicle as the MRI, but the test drive is the EMG.

He also mentioned something that I have not read anywhere that stuck with me and I think would be valuable to many people who frequent this board. I told him the muscle twitching, or fasciculations, started in the left calf and then migrated to the right calf. I knew in advance from the information provided on this forum that this is not how twitching progresses in ALS. However, his response shocked me and was definitive:

They NEVER see ALS muscle twitching begin in calves. It is not a place where ALS occurs at onset.

That is huge in my opinion because I have seen a ton of people post in hysterics because the calf muscle was twitching. He also noted that the twitching does not jump around. Twitching will be localized and there for some time before migrating to a nearby muscle. It will be the same muscle repeatedly.

At the close of the appointment he stated, "I am not sure I have ALS, but I am sure you do not." Nothing is ever 100% in life, but in my head that is about as close as it gets. I might have ALS one day, but I do not right now. Hearing this was bittersweet. I was happy that I did not have this malady, but my thoughts immediately gravitated to the individuals fighting this disease.

The lesson I learned from this is that life is short and can throw a curve at any point. So put down the work, walk outside, kiss your loved ones, smile, and soak in everything you can while you can.

I am signing up to be an ALS association advocate and hope to plan a fundraiser in my local community this summer. I have learned so much about the courage of PALS and the need for aggressive research and legislation to help them. I appreciate the advice you offer and I hope to join the fight to bring real treatment and an eventual cure to this tragic and oft overlooked disease. Thank you all.

 

[Nikki J]

Thank you for posting follow up repeating important points. Dr Appel is terrific

please clarify this remark he made "I am not sure I have ALS, but I am sure you do not." he is not sure he has ALS.???

 

[connorg3]

He said it in a joking manner to emphasize that I do not. In other words, he is so confidant that I do not have an MND that he believes that there is less chance I have it than even him, and he doesn't have it either.

 

[Nikki J]

Got it! Thanks again