Another twitcher

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Walt46

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Oct 20, 2022
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Learn about ALS
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UK
I have had a constant muscle twitch in my bicep for 2 months 24/7 which has moved down to my forearm in the past week and is more of a cramp now because it jerks my arm. I feel quite jelly with my legs recently and when I type I’m hitting the wrong keys a few times like I can’t stretch my fingers in the same way. I ignored this but it’s now affecting my sleep so I seen a GP who referred me to Neurology which will take a few weeks to be seen.

I have ended up here for obvious reasons and am tearful and frightened as I have a young family.

Can this really be anything else?

Also, I’m sorry to anyone who has this awful disease you are all in my thoughts and so are your families.
 
Hello-

We ask that people read here first: Read Before Posting

It explains about twitching absent any other real symptoms. A clinical exam by a neurologist will provide you more information about what they might think is the trouble. It's not even clear if your issue is neurological- which is why you must wait til you see the neuro.

Please let us know how it goes.
 
as indicated by the sticky post, the chances this is ALS is almost nil. you have been referred to a neurologist, let them do their job. most neurologists have never seen ALS, so that is not the reason you are referred to one.
 
With a young family, your sleep is probably not great in quality or quantity. This can affect things like limb movements. I agree that ALS is a huge leap. Let the process play out and presuming nothing dire is found, it might be time to look at sleep, stress, exercise, diet, hydration, and all those boring but important things. Meanwhile, enjoy your family -- a good day makes for good sleep.

Best,
Laurie
 
Thank you for all your responses.

So now I have constant twitches on the rights side of my body, every couple of minutes but now it’s more of a cramp and jerk in my arm.

I’m worried as I’ve seen a few stories where symptoms have started as mine are. I also read that twitching is what will start to cause the muscle to become weak so I feel like I’m just waiting for that to happen now with it being 8 weeks, constants and only in the right side of body.
 
Walt, there's not much we can do for you here, as you are speculating. Please make sure to discuss with your doctor. When you have seen your doctor, feel free to report back.
 
If you want to say things you have read that contradict our post that we directed you to, then that is your choice.
But you can't bring those things to us and expect our members to invest energy in it.
Please return to your doctor and get a grip on your situation as the thing you do have a choice in, is how you spend this time.
All the best, only doctor reports are useful here now.
 
Hi all,

I seen my GP today and she said she was quite concerned how my symptoms have changed in the last 10 days. She has given me a referral letter to go private. Do I just go and have an EMG done do you think or see a Neurologist first? Should I travel further a forked and try and see one that specialises in MND? Not sure how to go about going private. Thank you all.
 
Walt, your GP is the person to be asking these questions. She is the person who recommended it, so she would be the one to tell you how to go about it and who you might approach. She is most familiar with the issues and what records, etc, that you must provide to whoever you approach. If a doctor makes a recommendation, they are the ones who can tell you how best to go about it and what language to use, specific to their clinical observations, when requesting a private consultation.
 
I can't agree more - go and ask your GP who is doing the referral.
We haven't a clue what is going on with you by text.
You can let us know the results, but until then work with your doctor please.
 
So here I am in hospital despite having and EMG booked for tomorrow due to twitching in my rights leg which is a new symptom. They advised the the EMG tomorrow will not rule out ALS as it is too early to confirm after just 3 months of twitching but would be a good indicator. I asked if they suspected MND and they said there is a chance. All I can see is my to bits and poor wife with a life without me. This doesn’t seem real.
 
Why are you in hospital?
 
I twitch all the time and I don't have ALS. In fact, I'm twitching now but that's because I don't get healthy sleeps, I've been eating poorly, and I had a drink last night (the typical life of a caregiver).

You sound very anxious and that anxiety is manifesting in a somatoform manner.
 
I called my gp just to mention it has spread to my right leg now as they said report any changes. They rang neurology at the hospital and said they wanted to see me. Said they didn’t want to scan my head as the constant twitching which is non stop in arm and leg rules out a few things for them and are going to call me tomorrow after my EMG, though won’t be conclusive even it comes back clean as said it was too early. The first doctor said causally “sounds like MND”which shocked me. When seeing her senior he said it was constant and very jerky. Relaxed were fine when checked and so were bloods but that’s all that was done. They will call me once I have my results tomorrow and advise where we go from there.
 
There is no "too early" in limb onset ALS. Furthermore, neuromuscular specialists do not suspect ALS based on meaningless twitching. Who was the neuromuscular specialist that made this claim?
 
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