Another twitcher

affected

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Doesn't sound right in the least. I am betting that 'first doctor' is not a neuromuscular specialist however, as they would not throw out a statement like that.
If you go back and read out sticky post, you will see why the EMG is not being done too early, and why twitching alone means nothing.

Do let us know the outcome.
 

Clearwater AL

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Walt, do let us know the outcome. But, until then... you're asking questions here your GP gets paid
to answer and any future specialist. No need to reply again until you have the EMG report with the Summary/Conclusion at the bottom of the report.
 
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Walt46

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I’ve had my EMG done by a Neurophysiologist who said he can’t see anything that concerns him and I need to see a neurologist. I told him about the comments that were made yesterday, - that the EMG was not conclusive if it was clear, which he agreed to a certain extent but said it was a good indicator that I don’t have it based on his assessment today and no follow up required with him. I didn’t get any report like I have seen others have on here and it only took about 15 minutes the actual test itself, thought this would have been longer.
 

Bestfriends14

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It wasn't longer because you don't have ALS. There no need to waste his time, your time, or other patients' time, hence the short exam. I'm glad you got this wonderful news; please take it and be grateful. Any of the.members would love to have had your test results. Think about that...
 

Clearwater AL

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Walt...

"which he agreed to a certain extent but said it was a good indicator that I don’t have it based on his assessment today and no follow up required with him."

Key words... " but said it was a good indicator that I don’t have it." (I don't have it... No follow up required)

You're good to go from this forum. This has gone on for two pages, 19 replies.

I'd suggest don't linger around the forum reading old threads. One recently cleared (had Health Anxiety) stayed around reading old threads going all the way back to 2017, 2018... which does not help him get over Health Anxiety. It's up to you. There's nothing more we can add to your situation.

Hope you can move on to a healthy life leaving ALS concerns behind.
 
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Walt46

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I had a call from my neurologist at the hospital this morning saying that an EMG after 3 months of twitching in one limb is not conclusive and would generally like to do another EMG after 6 months. I also see there are some recent posts on here where twitching alone was an initial symptom so maybe I’m about to encounter weakness in the next few months, maybe not.

I do find it confusion why it suggests in the sticky notes that an EMG is never too early - it seems to be documented by a few MND directors online that you can have an EMG too early if twitching is your only symptom, which is why my neurologist is suggesting the same maybe.
 

Nikki J

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A lot of doctors use six months to clear someone. From the sticky
Why do I see people saying their EMGs were normal when their ALS started? For those people who are accurately reporting their diagnosis the answer probably is that their ALS started in their Upper Motor Neurons and then progressed to the Lower Motor Neurons. Upper Motor Neuron disease is found on clinical exam so these people were not told they were fine. They had an abnormal exam and the neurologist knew there was something seriously wrong. If your exam was fine ( or just some brisk reflexes which are normal in many cases) this is NOT you.

the twitch only prodrome is extremely rare in everyone even in the two subgroups where it is seen ( but rarely ) some forms of genetic ALS and males over 50. If your exam was normal and your emg was too you don’t have MND at this time. No one can say you won’t get it but your risk is very low

if you do not trust us which is absolutely your prerogative perhaps you will be happier elsewhere. The purpose of this subforum is to answer questions to the best of our ability not to argue and unfortunately not to be a support system for the undiagnosed. If you have a genuine question ask it otherwise let us know the results of your follow up
 

affected

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If you search the internet hard enough you will find a contradiction to every statement made on every subject.
Good luck and come back in 6 months and let us know the result of the next EMG please.
 

Walt46

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I’ve done my absolute best to just move on and forget about my arm and leg twitching but I just can’t ignore how things have escalated. Since my clear EMG 2 weeks ago I have felt more relaxed, happy and stopped worrying, but the twitching and spasms in the past week have spread to my chest, back, throat, feet, stomach on my right side only. I lifted some weights earlier for 10 minutes and my right arm went into a huge spasm whilst lifting, and when releasing the weight which has never happened to me before. Yes, I’m going to get told off that I have no clinical weakness here but if anyone can advise if I should have another EMG already then it’s much appreciated as all your valuable responses are.

I also had a message from the doctors to attend in a weeks to discuss the results from my EMG, which I thought was all ok.

Thank you again.
 

Nikki J

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Perhaps/ likely the discussion will be emg was ok we need to look elsewhere. The usual interval even when something is seen that is worrisome for another emg is 3 or 6 months. There is no point in having one after a a couple of weeks unless you were at a new doctor who wanted their own. things just don’t change that fast
 

affected

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Repeat EMGs closer than at least a few months together don't tell anything.
I can hear how concerned you are and would suggest you either try to see your doctor earlier, or make some really clear diary notes on what is changing and happening and your questions so you make the most of the appointment next week.
This will be a great time to really get to the heart of what you doctor feels is happening and what is next.
Let us know how that appointment goes.
 

Walt46

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Thank you for you responses. I’ve booked to see a doctor again as I think an MRI is worth doing. I now have twitching on other side of body in my arm hands and legs which is frequent, but not 24/7 like my right side, yet. To summarise, I’m 3 months of 24/7 local twitching in right arm ( 1st month- bicep, 2nd month - forearm - 3rd month whole right arm) and 4th month of right side twitching arms and leg and heavy fatigue in my right side, including last 2 weeks resulting in all over body twitching and constant a buzzing down right side of body. EMG advised ok at 3 months but not discussed in any detail. Last 2 days by the end of the day and just resting my both arms are very fatigue like a dead leg feeling in both arms. Does this sound typical of ALS manifesting from the rare “twitching was my first symptom” stories?
Thank you so much agin for reading.
 

Bestfriends14

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No, nothing at all like ALS. Please update after you've seen the neuro. Any further questions should be asked of your doctor, as the folks here cannot guess or diagnose you with whatever it is that you have going on.

Good luck
 

Clearwater AL

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Walt, you joined Oct 2022, almost two months, you’ve had 27 relies, an very unusual
three thousand views, this has gone on for two pages. You have scoured old threads,
you even looked at one going back to June 2013 when Ottawa Girl was a Moderator.

I know, in the countless threads you have read, what the answer would be from
what you just posted above. My count is that you have had two EMGs, both
had no indication of ALS. I believe you mentioned you are considering a third.

It’s clear, to at least me, you are suffering from considerable Health Anxiety.
Reviewing countless old threads does not help that at all. It seems you are
developing a fixation on ALS when it just isn't there. Health Anxiety.

Walt, there is really no reason to post anymore symptoms, questions until you
have been seen by Neuro again, (another Neuro, another EMG ? ) you haven’t
posted the Summary/Conclusion of your last EMG. But... do post the
Summary/Conclusion... if you do have another EMG.



Until then…
 

Walt46

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Agreed. Just the one EMG and no paper work yet until the 16/12. Will post then. I’m a member of Bfs/ms/anxiety groups and my symptoms don’t fit with others so I feel like they fit more with others in the ‘ is this ALS’ based on historic posts on here. I’ll update only when I have clinical reports and not my own beliefs or thoughts. Again, thank you for your replies, and you won’t know what it means to me when you do, so thank you, all of you.
 
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