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Old 04-17-2015, 09:06 AM #1
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My whole body twitches , vibrates and pulsates. I keep thinking there is sonething going with my circulation but dr says no...
thanks - your twitches - do they happen even when you are using the muscles? do you have any weakness (clinical weakness confirmed by a doctor)? do certain things aggravate your twitching (exercises, certain positions)?

the heart beat - pulsating thing is almost as annoying as the twitching. It's like my whole arm and shoulder are thumping with my heart beat.

also - do you have PN as a diagnosis? I was not sure from your profile and I am just getting to know people on here.
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Old 04-17-2015, 10:26 AM #2
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thanks - your twitches - do they happen even when you are using the muscles? do you have any weakness (clinical weakness confirmed by a doctor)? do certain things aggravate your twitching (exercises, certain positions)?
Yes, my twitches happen even when I am using my muscles but I notice it much less. No weakness, which is why my neuro thinks I am depressed and it's all in my head. Exercise definitely makes my twitches go from 100+/minute in ALL areas of my body at the same time to double that. Although it calms back to base 100+ after 1/2 of rest.

the heart beat - pulsating thing is almost as annoying as the twitching. It's like my whole arm and shoulder are thumping with my heart beat.
I agree

also - do you have PN as a diagnosis? I was not sure from your profile and I am just getting to know people on here.
I had an emg/ncv on one lower arm and one lower leg. One doc told me carpal tunnel on the arm and another told me slight neuropathy on the arm. so I don't know. Plus, it was done before I had any pain. I don't think Ive had a proper emg/ncv because it didn't cover very many areas of my body. I have a skin biopsy scheduled for may 20. I am a 31 year old female.
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Old 04-17-2015, 10:45 AM #3
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I also had twitching/cramping as my first symptoms. Then "perceived" weakness. At that time I was convinced I had a MND, but testing and multiple neurological exams has pretty much ruled it out. Later, the weakness seemed to gradually resolve - but then the burning feet, etc. started. Unfortunately, I don't have a diagnosis yet despite the fact that my symptoms certainly seem to match some type of sensory neuropathy.

Have you had an EMG & nerve conduction testing? That is one of the main tests that is used to rule out ALS/MND, and also will identify motor neuropathy.

As for nerve healing, it is slow and logically it can only happen if the underlying cause of the damage is resolved. There are a number of supplements that can aid in this process including B12 and various other B vitamins, alpha lipoic acid, acetyl-L -carnatine, and so on). Check out the Supplements thread as well as the many, many posts on this topic throughout this forum for more info.
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Old 04-17-2015, 10:54 AM #4
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I also had twitching/cramping as my first symptoms. Then "perceived" weakness. At that time I was convinced I had a MND, but testing and multiple neurological exams has pretty much ruled it out. Later, the weakness seemed to gradually resolve - but then the burning feet, etc. started. Unfortunately, I don't have a diagnosis yet despite the fact that my symptoms certainly seem to match some type of sensory neuropathy.

Have you had an EMG & nerve conduction testing? That is one of the main tests that is used to rule out ALS/MND, and also will identify motor neuropathy.

As for nerve healing, it is slow and logically it can only happen if the underlying cause of the damage is resolved. There are a number of supplements that can aid in this process including B12 and various other B vitamins, alpha lipoic acid, acetyl-L -carnatine, and so on). Check out the Supplements thread as well as the many, many posts on this topic throughout this forum for more info.
Thank you - I will look into the other threads about treatments.

Were you ever diagnosed with clinical weakness from a doctor? I have, with my shoulder.

My EMG was abnormal in my arm. Showed the things that I posted above. The doctor ruled out ALS only because of the sensory and pain issues, my age and the location of weakness (shoulder), but I am so uneasy about this. What were the reason ALS was ruled out for you? Did you have abnormal EMGs?
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Old 04-17-2015, 02:48 PM #5
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Thank you - I will look into the other threads about treatments.

Were you ever diagnosed with clinical weakness from a doctor? I have, with my shoulder.

My EMG was abnormal in my arm. Showed the things that I posted above. The doctor ruled out ALS only because of the sensory and pain issues, my age and the location of weakness (shoulder), but I am so uneasy about this. What were the reason ALS was ruled out for you? Did you have abnormal EMGs?
For me, ALS was ruled out due to clean EMG, lack of significant clinical weakness, and lack of progression over a period of several months. MS was ruled out due to clean brain and neck MRI's and normal results on somatosensory evoked potentials testing. It was certainly a relief to find out that I did not have have these very serious diseases.

Now, if only I could get a definitive diagnosis of what is wrong with me.......
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Old 04-18-2015, 10:49 AM #6
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For me, ALS was ruled out due to clean EMG, lack of significant clinical weakness, and lack of progression over a period of several months. MS was ruled out due to clean brain and neck MRI's and normal results on somatosensory evoked potentials testing. It was certainly a relief to find out that I did not have have these very serious diseases.

Now, if only I could get a definitive diagnosis of what is wrong with me.......

I am happy for you, it is a blessing if this could be ruled out....but I have an abnormal EMG with clinical weakness and am scared. Did they tell you that pain rules out ALS/MND (did/do you have pain)? That is what my neuro said to rule it out for me and that is the only string of hope I have right now...my weakness has not improved (yet) since healing takes a long time....so I am in a phase of waiting, will it improve or progress?

I also had a clean SEP and MEP.
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Old 04-18-2015, 12:30 PM #7
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Do you have any discoloration in the arm or fingers?

My understanding of some TOS is that it can result from a blood clot in a vein in the shoulder area. When that happens, nerves may be impacted with poor circulation, etc.

So some evaluations involve evaluating the blood vessels in the area. You might think about this aspect too, since you don't lift weights (move furniture or luggage), have an injury, swim too much, or throw balls etc.(sports)

Females on birth control pills can have odd blood clots in strange places, especially if they have a genetic error in the family to favor these. Some get the clots in legs, others, in deep pelvic veins, and some get them in the brain and elsewhere.
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Old 04-18-2015, 04:11 PM #8
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Did they tell you that pain rules out ALS/MND (did/do you have pain)? .
Note that I'm obviously not a doctor, so this is just what I learned from various sites: At that time, I had no pain, so it wasn't a factor for me. However, everything I researched at that time said that MND generally does not cause significant pain (or numbness, paresthesias, etc). So, while not definitive from a diagnostic standpoint - the presence of pain or other sensory symptoms tends to point away from MND. (That seems to match up with what your doctor told you.)
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Old 04-17-2015, 10:55 AM #9
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I had an emg/ncv on one lower arm and one lower leg. One doc told me carpal tunnel on the arm and another told me slight neuropathy on the arm. so I don't know. Plus, it was done before I had any pain. I don't think Ive had a proper emg/ncv because it didn't cover very many areas of my body. I have a skin biopsy scheduled for may 20. I am a 31 year old female.
Thank you and good luck with the biopsy. I wonder - what can they tell from a skin biopsy?
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Old 04-17-2015, 12:34 PM #10
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is the pain and weakness in your shoulder and arm on one side only?
I would look into the cervical herniations some more, get another opinion. Also have you looked into TOS, Thoracic Outlet Syndrome? Are you a swimmer, weight lifter or very athletic?
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