Concerning Studies about Fasciculations

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RS1984

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Hello, I'm a 37 y/o male. I've read the Read before posting, but I have some questions I wanted to clarify. I've been experiencing fasciculations for about 15 months now. It started in one eye, then moved to the other eye. At this point, the eye twitching is basically constant whenever I close my eyes and then reopen them. It occurs on the lower and upper eyelids, as well as to the side of my eye between the corner of my eyes and temples. The twitching first moved to my right calf and also after working out, in my left triceps. It has moved throughout my body over the past year, and I experience them now in my jaw, side of head, neck, calves, arms, thighs, back, and occasionally right hand. These are not constant, but just moves from place to place, sometimes with just a couple twitches and other times going on for 30 seconds to a minute in the same area repeatedly.

When I have twitching somewhere, I will sometimes hit hit or tap that area with my hand/fist to try to make it stop, and that makes it worse and begins firing off in different muscles in the area. That scared me since I've read that with MND, that flexing or flicking a muscle would bring out the fasciculations. I also have recently noticed that my left tricep twitches almost constantly, but it's a much slower twitch than everywhere else. Almost like the way a person's stomach would move when they inhale and exhale slowly, the muscles rises for a few seconds, then slowly falls back down. Has anybody ever encountered anything like this before?

Since I occasionally have twitching on the side of my neck, I was searching for answers and found a study from Jingwen Liu (2021), which concerned me, where they compared twitching in MND to benign causes: "No fasciculation was detected in suprahyoid muscles for non-ALS patients in this study. Therefore, fasciculation in this area was highly specific for distinguishing ALS from non-ALS diseases."

Has anybody ever heard of neck twitching being an exclusive feature of strictly MND?

My biggest concern comes from this study from TL Williams (2013): "Widespread, asymptomatic fasciculation (of which the patient is unaware other than by observation) is highly suggestive of MND"

I had always been under the impression that widespread twitching was a good thing and less likely to be MND, but this study made it sound like BFS is usually just in a few spots and stays in those same spots, while something more serious is likely to be all over the place. I wasn't sure if anybody could possibly provide me with some insight into this.

I have read about cases of twitching coming a few months before weakness. I've had some trouble swallowing and some weakness in my right arm, but nothing that would be considered clinical weakness. Mainly my grip just feels weaker and when I exercise, my right arm tires and becomes sore much quick, especially in the forearm area. It seems like the muscles are harder and more solid on my left arm, which is odd since I'm right handed. But again, this would not yet be clinical weakness, so I wasn't sure if it could be an earlier stage of it? I've also noticed some cramping in my right arm and thigh, which I don't notice on the other side.

I'm sorry to post such a lengthy inquiry, but the fact that this twitching has continually gotten worse over the past 15-16 months has been worrying me. I truly appreciate any insight that can be provided. Thank you, and I wish everyone here the absolute best.
 

ShiftKicker

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Hello- sorry you find yourself here again. In your last thread (Strange Symptoms) it was recommended you visit with your doctor again to go over your EMG results and or possibly see another neuro if you were not confident with the one you'd already seen. Have you done so? It's pretty clear you are still very anxious about ALS, despite the reassurances provided you here and also being cleared by a neurologist.
 

RS1984

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Hi, and thank you so much for the response. I still have not been able to obtain and actual report from my doctor, but he keeps telling me the result was normal. However, only my right arm and right leg were tested during that EMG, which has me concerned about the fact that I have a lot going on over on the left side, including in that neck area.

Ultimately, I believe I will need a second EMG, but he's been reluctant to perform it, since my insurance recently changed and my deductible reset, which would make it almost completely out of pocket. I have an appointment with him in a couple weeks, but it's been difficult to not search for information in the meantime due to the persistence of these twitches and the fact that it keeps getting worse.

I'm not sure whether to be encouraged that I've had 15 months of progressive twitching with no clinical weakness or concerned by the persistence of the twitching. But when I found that study about widespread twitches being suggestive of MND, admittedly, it legitimately terrified me! Thank you again for taking the time to speak with me.
 

ShiftKicker

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Your medical records are yours- so you have a right to access them. Your gp would have received a specialist report from the neuro, no? This would provide not only your emg results, but the conclusions and notes from your clinical exam.
 

affected

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I'm so sorry that you are still chasing this awful terminal disease with only twitching.
Please do go sit down with your doctor and ask for help as you have a whole life ahead of you.
 
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