Find myself back here again

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villa07

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Jul 1, 2022
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Learn about ALS
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Had some very serious ALS concerns back in June. Calf twitching and stiff muscles in my legs with cramping in my arms and the odd twitch around random places. I ended up going to a private Neurologist last Sept who said benign fasics and I sailed through the strength tests etc

8 months later and not a day passes where I don’t think I have this disease. My calfs continue to twitch, I now have a really ‘off’ feeling arm and my right hand is clumsy and I feel like I’ve lost dexterity. Is it possible I visited the Neuro too early and the disease hadn’t developed enough to be detected with her strength tests. Honestly I’m in such a mess. I twitch from head to foot and it’s driving me to despair
 
Hi there-

Here is your prior thread. If you're still worried after your appointment 5 months ago, you can certainly visit with the doctor again to see if they can detect any changes since your last visit and provide you some feedback about their observations.

If you are struggling with such debilitating anxiety about your health, you may need to address that as well while you work out what, if anything, is physically wrong. Anxiety can definitely amplify twitching and cause people to be hypervigilant about physical sensations. Not dismissing your health concerns, but thinking you need some proper support while you deal with health worries.
 
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Go and look at the responses from your old post. They will still apply today.

Good luck to you and take good care.
 
I would go see the same Neurologist.
This will allow you to have another strength test and exam by the same person and as Shiftkicker says they can actually measure if there is any change. There could be other reasons for a change that are much more likely, but first thing you need to know is if there has been any change.

If there is no change, you can really put this completely to bed and get mental health help for the anxiety.

If there is less strength and any other clinic signs, the neurologist can help you work on what needs to be investigated. Again, they are not going to thinking ALS, but a whole host of other causes. It could be a simple as something that will be sorted with some physio. If so, started some treatment now is going to be the best idea.
 
I agree you should go see the same neurologist. It won't hurt to get something for your anxiety, too. Many of us on this board, both PALS and CALS take something. Anxiety is nothing to be ashamed about. I've had it since I was in my 20s. In my case, it wasn't associated with health, I just inherited wacky brain chemistry.
 
Hi, so I took your advice and saw the same Neuro as I did in Sept yesterday. She performed the same strength tests and said they were completely normal. She said if it was anything sinister there would be a very marked difference in the 6 months that had elapsed. She said she has a lot of patients in her clinical practice worried about MND/ALS as a result of twitching, the overwhelming majority being completely benign. She again said she’s certain it’s benign fasiculation syndrome and offered an EMG saying it’ll close the anxiety loop, I said I’d think about it given this latest reassurance might be all I need to put it to bed. Hopefully I can now
 
So glad to hear this. Try not to Google things. If you need support, try a benign fasciculation forum.
 
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