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Old 02-09-2019, 11:49 PM   #1
Streetlegal
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Default Fasciculations

My calves don't stop twitching, and, for the last three months, fasciculations have impacted my face. My eyelids and eyebrows twitch pretty much non-stop. It is very distressing and just adds to my now very deep depression.

Does anyone else have this? Have you been treated?

Thank you
Paul
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Old 02-10-2019, 02:10 PM   #2
Lerch
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Hi Paul, I'm new here and I do have fasciculations in my calves and other areas, and I do have peripheral neuropathy, I'm 54. I'v only been diagnosed for a few months. I thought I might have ALS for a while and was terrified, so I can imagine your worry. But I've always had the occasional twitch, especially around the eyes, which is an unusual place to have twitches that are associated with anything serious. From my experience the twitching got MUCH worse the more I worried about it. Benign Fasciculation Syndrome is very common. Beware of Dr Google, it can be useful, but some search results can be quite skewed vs the likelihood of the condition.

How old are you? Do you have any other symptoms? Have checked with you doctor?
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Old 02-10-2019, 07:54 PM   #3
Streetlegal
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Originally Posted by Lerch View Post
Hi Paul, I'm new here and I do have fasciculations in my calves and other areas, and I do have peripheral neuropathy, I'm 54. I'v only been diagnosed for a few months. I thought I might have ALS for a while and was terrified, so I can imagine your worry. But I've always had the occasional twitch, especially around the eyes, which is an unusual place to have twitches that are associated with anything serious. From my experience the twitching got MUCH worse the more I worried about it. Benign Fasciculation Syndrome is very common. Beware of Dr Google, it can be useful, but some search results can be quite skewed vs the likelihood of the condition.

How old are you? Do you have any other symptoms? Have checked with you doctor?
Hi Lerch--thanks for replying.

I'm the same age as you! Diagnosed with Idiopathic PN about 18 months ago. Initial symptoms = mainly paresthesia (which waxes and wanes) but the calf fasciculations began about 6 months ago and have never stopped.

The eye and eyebrow twitching has occurred for 3 months, daily.

I do agree that worrying and googling makes it worse--but, of course, with such an unpredictable condition it is hard not to worry. "What will tomorrow bring?" is a question that is always on my mind. I've been in a very dark place, distressed and depressed. However, I am now trying to take back some control and gain some peace and equanimity.

Have arranged to see my consultant--I'll update after visit.

Thanks for replying--sometimes this forum (though I'm grateful for it) feels a bit . . . quiet?

I take gabapentin but not sure it does much, tbh.

Cheers
Paul
PS do you take any medicines? do you have any treatment for your twitching?
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Old 02-10-2019, 09:42 PM   #4
Lerch
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Hi Paul, you're the first to respond to me too, so thanks! I've only been here a few days, but I know what you mean about the 'quiet'! I don't take any medications for PN, yet, as weakness is my main issue, but I do take Trazadone to help me sleep. I do have pretty numb feet and I sometimes have shooting 'shock' type pain, but thankfully nothing worse. I've noticed the changes in foot numbness corresponds to and increase in weakness everywhere else.

I was only diagnosed this summer, and Googling sent me into a bit of hysteria about MS and other things..had no clue about PN until diagnosis. I noticed my calves and hands/arms twitched quite a lot when I first was worrying about the conditions, although I now have significant weakness in those areas, and thighs more recently, but it seems this is not too common. I've been in a pretty dark place too....I worry about tomorrow...its hard to plan life when you're not sure what your capabilities will be next month... I hope you can continue to make headway against the darkness!

Please feel free to pm me or whatever the equivalent is here if you want to chat...I look forward to your update!
John
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Old 02-11-2019, 11:26 PM   #5
Streetlegal
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Originally Posted by Lerch View Post
Hi Paul, you're the first to respond to me too, so thanks! I've only been here a few days, but I know what you mean about the 'quiet'! I don't take any medications for PN, yet, as weakness is my main issue, but I do take Trazadone to help me sleep. I do have pretty numb feet and I sometimes have shooting 'shock' type pain, but thankfully nothing worse. I've noticed the changes in foot numbness corresponds to and increase in weakness everywhere else.

I was only diagnosed this summer, and Googling sent me into a bit of hysteria about MS and other things..had no clue about PN until diagnosis. I noticed my calves and hands/arms twitched quite a lot when I first was worrying about the conditions, although I now have significant weakness in those areas, and thighs more recently, but it seems this is not too common. I've been in a pretty dark place too....I worry about tomorrow...its hard to plan life when you're not sure what your capabilities will be next month... I hope you can continue to make headway against the darkness!

Please feel free to pm me or whatever the equivalent is here if you want to chat...I look forward to your update!
John
Thanks John. I'm in a dark place right now, not knowing what the next day might bring.

I've begun to realize that perhaps the relative quiet of this forum is, sadly, due to the complete dearth of effective treatments and lack of corresponding success stories.

I don't find much to look forward to anymore, dreams have gone. I'm an oddball. If I could give up work, I would. I feel trapped, with a body that is wrecked and beyond my control.

For the first time in 20 years I want to start smoking again--just crave some solace.

Paul
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