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dan12345

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Hello everyone. My name is Daniel and I am 18 years old. For about a year, I have been having fasiculations that have progressively gotten worse.These happen everywhere on my body. In my calves they are 24/7. The rest come around my body like popcorn. Ive noticed that with movement, they increase. After strenuous research, I acknowledged that with no weakness, it would be unlikely for it to be motor neuron disease. I do have Obsessive Compulsive Disorder and Health anxiety, so I arranged with my family an appointment to see a neurologist. In september of 2015, My neurologist did a clinical examination and noticed no weakness and said that this was likely benign fasciculation syndrome but that she would like to have an emg done in the following months. I began to forget about these twitches recognizing that they were most likely benign, until the 9th of March where I had my EMG. The results shocked me. The man that did the EMG said the results were abnormal and wanted me to see my neurologist soon. My neurologist told me that my nerves were firing off too much and that it technically was a disease. She thought it was something along the lines of Spinal Muscular Atrophy but more on the benign end. The results of my EMG showed that I had widespread polyphasic units in every muscle tested some being very large (3+). They also all had increased duration and increased amplitude. There was no spontaneous activity, but fasiculations were present. She told me this was odd and that she wanted me to see a specialist in Boston (lahey clinic). About 3 weeks later I went to the lahey clinic where the neurologist there told me it was unlikely ALS (99% positive I don't have it) due to me having no weakness and the twitches being there for such a long time. Although he didn't really see my fasiculations there, which was frustrating. He did say that my emg was abnormal and that it showed Chronic Denervation. I'm very scared. He also the man that took my emg was very experienced so he would not expect much different results if I were to get another test. Never the less, he wants me to get a repeat test. He said if that comes back abnormal we will be in sort of a wait and see period. I have looked at these forums for posts on large MUPs on emus without spontaneous activity and I have been a little encouraged by seeing that its not the end of the world. I notice the love on these forums and every one of you suffering with MND are true fighters. I would appreciate some thoughts please
 
By the way, the neurologist at the lahey clinic said it was also very unlikely I had SMA due to no weakness. So why the large MUPs?
 
The only other symptom I really have is when I extend my arms, I get a very weird nerve feeling going up my arm. It's odd and I can't quite explain it.
 
My understanding of largeMUPs is that they can be of. No significance at all. I have a memory that there was one source that said one cause could be working out a lot. I definitely know of cases where they just went away. I was also told directly by an ALS specialist who is one of the leadng emg doctors in the US that t was like having a very slightly higher than average temperature of 99 not a fever and if no other symptoms you would just wait. Most people would just revert to normal.
So please do not panic. Lahey is an excllent institution. If you need another opinion Mass General
We see a lot of people reporting this finding. I can not remember one returning withan ALS diagnosis or anything else bad
 
Thank you very much for the reply. Chronic Denervation just really sounds freaky! I hope and pray it all works out
 
And the fasiculations! They terrify me, sometimes they move my fingers!
 
I just had one more question for everyone that can answer if they have the time. Is it an extremely good sign that clinically I was okay? Negative babinski. Maybe I'm getting over anxious it's just I'm very concerned about the denervation across my muscles with the amplitude and duration.
 
Hi Daniel.
18 years old. <> I’m told that it’s possible for a teenager to have ALS, but I’ve never actually seen it happen. Unless he couldn’t walk or talk, I wouldn’t believe an 18 year old who said he had ALS.

Fasciculations for a year <> First, there are many different kinds of twitches. I try not to use the big words because it pretty much takes an expert to know the difference. I don’t know which kind of twitch you have, and probably you don’t either. But either way, twitching is common to many conditions. Even perfectly healthy people like me can twitch a lot. So twitching isn’t diagnostic of anything, really.

Plus, if ALS were the cause of your twitching, and it started a year ago, you would probably be seriously disabled by now.

neurologist did a clinical examination and noticed no weakness and said that this was likely benign fasciculation syndrome but that she would like to have an emg done in the following months. <> I consider it important that a very smart person with a lot of medical training was not concerned about ALS when she examined you. T

man that did the EMG said the results were abnormal <> Lots of things can be abnormal.
nerves were firing off too much. <> That’s the opposite of ALS. In ALS, the nerves get destroyed and cannot send a signal to the muscle.

Spinal Muscular Atrophy but more on the benign end <> Very different disease than ALS.

widespread polyphasic units in every muscle tested some being very large (3+). …all had increased duration and increased amplitude. …no spontaneous activity <> I’m no expert on EMGs, but Nikki knows a lot about them, and she’s already commented “large MUPs…can be of no significance at all.”

Lahey neurologist there told me it was unlikely ALS (99% positive I don't have it) <> One of the most knowledgeable people in America has put his license on the line here—I’d believe him.

he didn't really see my fasiculations there, which was frustrating. <> That’s OK; twitches just are not a big deal.

He did say that my emg was abnormal and that it showed Chronic Denervation. <> Can be either MNDs or peripheral neuropathy. Most of these diseases are not deadly. PN is very, very different than ALS.

very weird nerve feeling <> has nothing to do with ALS. This is something else

Is it an extremely good sign that clinically I was okay? Yes.
 
Thank you very much for taking the time to read my post Mike. I greatly appreciate it. The twitches that I have progressively gotten worse. They originally were local in my legs and now they are just about everywhere! In my calves and feet they are all day long. The rest are there but are much more prevalent after sudden movement. I often wake up at night because of them. If I sneeze, my ribs will twitch as well as my back. My first neurologist said that it was out of her league after my first emg. I'm very nervous about an emg I will be having in a week. If this were als, would something new be on the emg? If this also were the disease, I wonder if fibs and psw's would have appeared as well as the widespread polyphasic units. I do feel awfully young to have to worry about MND. It's very frightening. The man that did wrote in his report that "overall I am not confident that I couldn't find anything" and wrote in his post diagnosis MND, which scared me! I really should listen to the neurologist at lahey, It just scares me that his odds of me not having it might change in just a week. I wonder if the reason he told me it was unlikely is simply because I'm not weak, or including my emg results as well. I'm scared of being in a wait and see period. Truly most of this points away from the disease except the abnormal emg and the twitching. Maybe my OCD is getting the best of me. I just am very confused and terrified about all of this.
 
I believe that my neuro at lahey thinks this is benign fasc syndrome. That makes me just wonder where the denervation came from at the age I'm at.
 
Dan, the twitching means nothing. really. And the EMG is NOT suggestive of ALS.

There is a quote from Dr Turner an ALS expert at Oxford. He was asked about having EMGs when the exam was normal and twitching the only symptom. He said he would not do an EMG if there was no weakness. If he did do one ( which he would not) and the results looked like ALS he still would not make the diagnosis. Basically I think he was making the point that an emg is a tool only and the results need to be considered in light of the clinical presentation
 
Thank you very much for your input Nikki. You seem to be very wise on this subject and it means a lot you have replied. I hope I'm not being annoying with all of these questions.
 
I am answering seriously. You should be looking for the interpretation and explanation given to you by your doctor who is expert and will put your clinical presentation together with whatever the EMG shows ( or does not show) as an attending neurologist he has had an incredible amount of education and training before he even started his practice
 
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