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Old 04-13-2015, 03:48 PM #1
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I've asked family and friends if they have "twitches" and such and everyone I've asked gets them. Honestly I've never met anyone that doesn't get them.
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Old 04-13-2015, 03:59 PM #2
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I don't doubt that is true. What I deal with now is a whole different animal than any sort of fasticulation in the past.

I'm sure results may vary, as is true with most things, but my forearms never kept the beat of "Tainted Love" before my neuropathy kicked it up.
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Old 04-13-2015, 04:04 PM #3
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I let my neuro know but when my PN symptoms started my chin started twitching something crazy. I'm an account executive and when I would be in front of a client and my chin started twitching I was wondering if they could see it lol
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Old 04-13-2015, 04:42 PM #4
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Thanks for posting this - after some of the discussion over the weekend I was about to ask the same thing. My symptoms started with stiffness, fasciculations, and tingling. This progressed into cramping and possibly myotonia. (This lead the first neuro I saw to test for Muscular Dystrophy.) Then the feeling of weakness and heaviness in the legs. Most of these things started to clear up when I went on Gabapentin. Then the foot burning started.

It is interesting that quite a few others seem to have developed fairly similar symptoms to what I did. Yet, three neurologists including two neuromuscular specialists have said they can find no neurological cause for my symptoms.

I think a lot of you know just how I feel right now. Its frustrating and scary when you know something bad is going on inside of your body but the Doctors can't help you or don't even feel there's anything wrong with you.
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Old 04-13-2015, 06:36 PM #5
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Originally Posted by Ragtop262 View Post
It is interesting that quite a few others seem to have developed fairly similar symptoms to what I did. Yet, three neurologists including two neuromuscular specialists have said they can find no neurological cause for my symptoms.

I think a lot of you know just how I feel right now. Its frustrating and scary when you know something bad is going on inside of your body but the Doctors can't help you or don't even feel there's anything wrong with you.
Yes, yes, yes!

Before I had the neuropathy, I can't ever remember as an adult being essentially called a liar or worse, mentally ill.

No neurologist believed my symptoms before the skin biopsy. Folks here could tell me what I had. But very well thought of and even famous doctors told me I did not have neuropathy.

My husband and I spent thousands of dollars traveling to other states to be told that my symptoms were not neurological in nature, blah, blah, blah. A wonderful aunt told me that they should have seen me before my symptoms and they would definitely believe me.

My family doctor and a kind female internist believed me. And of course, folks here on this board.

I hope you can stay strong and remember that you are the only one that knows your body.
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Old 04-14-2015, 12:34 PM #6
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Yes, yes, yes!

Before I had the neuropathy, I can't ever remember as an adult being essentially called a liar or worse, mentally ill.

No neurologist believed my symptoms before the skin biopsy. Folks here could tell me what I had. But very well thought of and even famous doctors told me I did not have neuropathy.

My husband and I spent thousands of dollars traveling to other states to be told that my symptoms were not neurological in nature, blah, blah, blah. A wonderful aunt told me that they should have seen me before my symptoms and they would definitely believe me.

My family doctor and a kind female internist believed me. And of course, folks here on this board.

I hope you can stay strong and remember that you are the only one that knows your body.
Yes, that seems to be a common story among people on this board. Fortunately, my symptoms are not that sever (yet), but they are getting slowly worse. I'm continuing to see the Doctors, and will push for more testing, etc. to identify what is going on and why. In the meantime, I am continuing to pursue dietary improvements and vitamins/supplements to see if they help. I'm also seeing an alternative medicine practitioner who is using a combination of acupuncture, cold laser, massage, and essential oils (not much success with that stuff, so I may be discontinuing it soon)

Like many here, I have a great job, but it does require a lot of walking, climbing (stairs and ladders), etc. One of my biggest fears is becoming too sick to work - but not sick enough to qualify for disability benefits.

Sounds like you have a supportive husband (and I have a supportive wife). That's one thing to be thankful for as all this plays out.
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Old 04-15-2015, 01:04 AM #7
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Originally Posted by Ragtop262 View Post
Yes, that seems to be a common story among people on this board. Fortunately, my symptoms are not that sever (yet), but they are getting slowly worse. I'm continuing to see the Doctors, and will push for more testing, etc. to identify what is going on and why. In the meantime, I am continuing to pursue dietary improvements and vitamins/supplements to see if they help. I'm also seeing an alternative medicine practitioner who is using a combination of acupuncture, cold laser, massage, and essential oils (not much success with that stuff, so I may be discontinuing it soon)

Like many here, I have a great job, but it does require a lot of walking, climbing (stairs and ladders), etc. One of my biggest fears is becoming too sick to work - but not sick enough to qualify for disability benefits.

Sounds like you have a supportive husband (and I have a supportive wife). That's one thing to be thankful for as all this plays out.
Thats what im told, is it stress,(therapist is reccommended". They think patients who complaining about neurological problems are druggies or some kind of mental condition. My pcp, thinks its all in my head, the suggestion of a therapist is evidence of that, furthermore, she only referred a opthamologist, as she dint believe in my other symptoms, though i did complain about vision problems, i was more concerned about my loss of sensations. which i still have.
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Old 04-15-2015, 02:41 PM #8
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Originally Posted by Ragtop262 View Post
Thanks for posting this - after some of the discussion over the weekend I was about to ask the same thing. My symptoms started with stiffness, fasciculations, and tingling. This progressed into cramping and possibly myotonia. (This lead the first neuro I saw to test for Muscular Dystrophy.) Then the feeling of weakness and heaviness in the legs. Most of these things started to clear up when I went on Gabapentin. Then the foot burning started.

It is interesting that quite a few others seem to have developed fairly similar symptoms to what I did. Yet, three neurologists including two neuromuscular specialists have said they can find no neurological cause for my symptoms.

I think a lot of you know just how I feel right now. Its frustrating and scary when you know something bad is going on inside of your body but the Doctors can't help you or don't even feel there's anything wrong with you.
Good to know. It just seemed like no one was mentioning this symptom and I was curious. I will try the magnesium again though I have tried some in the past. I do, however, think there is a difference between "everyone gets twitches" and the type of fasciculations that I experience and it sounds like others do too. True, everyone gets a twitch here and there, now and again but I am referring to a much more persistent type of fasciculation. Along with this, I too have experienced cramping in my feet - sometimes lasts all day and nothing improves it.
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Old 04-15-2015, 02:55 PM #9
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Magnesium citrate makes a difference and improves this symptom for me.
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Old 04-15-2015, 02:58 PM #10
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Good to know. It just seemed like no one was mentioning this symptom and I was curious. I will try the magnesium again though I have tried some in the past. I do, however, think there is a difference between "everyone gets twitches" and the type of fasciculations that I experience and it sounds like others do too. True, everyone gets a twitch here and there, now and again but I am referring to a much more persistent type of fasciculation. Along with this, I too have experienced cramping in my feet - sometimes lasts all day and nothing improves it.
I don't know anyone that gets fasiculations besides an aunt who has diabetes and a host of other problems. I just recently found out about her.

When I first had them, I filmed them and then showed the video to people. My doctor said that they can come with small fiber neuropathy.

Several friends and family said that they never had that. Cramps yes, but not fasiculations.

I have been taking magnesium due to folks' suggestions (thank you neurotalk) here and that has helped me. I still get them, mostly when lying down.
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