Please help. Extremely worried

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lgelb

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The young with slow progression thing doesn't work that way. You are good to go.
 

Jhn481101996

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Laurie may I ask you 1 last question? Is it a bad sign that I twitch 24/7 especially in calf’s. I know benign twitch is extremely common in legs. But I’ll get random thumps all over. But it just troubles me because I’ve read some stories. But why didn’t they see fasciculations on my EMG? My neurologist said since I’m twitching if it was from MND my EMG would be abnormal when symptoms started or right now 8 months later going on 9.
 

Nikki J

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no the twitches are not a bad sign. Calf twitching as you say is very very common in bengin fasciculation syndrome but so is all over twitching

it doesn’t matter that they didn’t catch any fasciculations on emg. What matters is whether there was denervation acute and chronic In an ALS pattern. Your emg was normal so you are clear. Twitches in als are a sign of dying motor neurons. Dying motor neurons show on emg. your normal emg says that your twitches are not mnd - just like your doctor said. You need to start believing the doctor and you definitely need to move on from here
 

Jhn481101996

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Thank you for your help. I have a follow up with my neurologist on the 21st. They scheduled a second EMG for me on the 28th. I assume to stop my worries. I’ve noticed exercise really aggravates the fasciculations. And I’ll have random thumps all over. It started in May. So I’m on month 8 now in December. I hope this is long enough to rule out something sinister. Just read some scary rare stories of an already rare disease. I currently have Covid and my legs feel weak and my feet are cold and tingling. I’m sorry if I bothered anyone. I’m trying to get over this. I currently haven’t noticed any atrophy. I feel like I’m slurring my speech etc.
 

Jhn481101996

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Does anyone like Nikki or Laurie have any more advice or insight on what this is I’m facing?
 

ShiftKicker

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There isn't much folk can say to reassure you that hasn't been said already, which is likely why there have been no replies. You must keep working with your doctor instead of returning here to ask forum members with ALS to keep responding. Until you have more information from your EMG, there's nothing really to add. No one here can help you get a diagnosis, and what you've posted in this long thread does not fit with the ALS pattern of symptoms. It's difficult to not have answers about odd physical symptoms, but the answers you have been provided already don't seem to have given you any peace of mind about it not being ALS.

While we sympathize that you must wait, this subforum is not really a place to go when needing support for anxiety surrounding health. This is something you can approach your own medical caregiver for or visit one of the several online anxiety forums for peer support.
 

Jhn481101996

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I was already given an EMG. And it was normal and I’m going on 8 months. Sorry to bother you all.
 

lgelb

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Fascics on an EMG are not the same as the twitches you feel. So a normal EMG doesn't mean that you don't twitch. It just means that there's nothing to worry about as regards ALS and a number of serious conditions.

If exercises makes twitches worse, that suggests that you may have a nutritional imbalance. It is worth looking at where your diet is providing calcium, potassium, sodium, magnesium, iron, B vitamins, etc., and hydration. Some of these compete with each other, so spacing them out across the day is advised.
 

Jhn481101996

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I’ll try my best. But everything that’s happening to me points away from MND?
 

ShiftKicker

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This thread has reached its natural conclusion and will be closed. Please do not open another. Your questions have been answered, sometimes multiple times.
 
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