This symptoms came on immediately when my PN came on back in the spring, and it was very intense. Being ignorant of what was happening to me, I recall being particularly frightened of the sudden leg or full body jerks when I was trying to fall asleep on my side. It was horrifying. It has calmed down quite a bit since, and I can't recall the last time I jerked suddenly, or more than a little twitch almost, but I do still shake when lying down and before going to sleep.

The interesting thing is before my PN began, when i first took diphenhydramine for supposedly "contact dermatitis" it is where my myclonus started, at first it was just 1 time jerks, but it became wierd as it involved both legs at once, sometimes the digits. When my PN began my myclonus just took off, constant movement with jerks, i first noticed it wouldnt stop when i was in the ER in jan, which the doctors did not pick up. Myclonus usually involves the brain though.

This seems thorough and useful:

http://www.ninds.nih.gov/disorders/m..._myoclonus.htm

Quick update ....
 

Similar to what a couple of you have reported the "violent" muscle jerks have subsided. I'm not sure what stopped them ... maybe the B12 injections? Maybe the Neurontin? Not sure. Only occasional now when at rest and not as strong.

Here's more info on my case:

In my first week after being diagnosed with idiopathic PN (nerve test was performed) I experienced a sudden onset of polyneuropathy symptoms. Burning, cramping and twitching muscles in spine, chest, neck, arms hands along with the initial symptom which was numb feet from mid calf down. I have had creeping numbness in my feet for many years that gradually turned into stiffness in tops of feet and ankles over the past six months. I also had poor balance and a feeling of unsteadiness walking.

The polyneuropathy made us think that a b12 deficiency could be an issue (if not THE issue caused by taking Protonix daily for over ten years). So, we thought it would be a good idea to start B12 injections asap.

BTW: "Us" is me and my husband ... we did not want to waste time trying to find a doctor to prescribe B12. We are following information provided by Mrs.D on the B12 sticky on this website (she is AMAZING!) and we are following dosage recommendations similar to the "Could It be B12" book.

Here's where I am with treatment ...

- I am on injection #14 of daily 1000 mg's methyl B12. I started on the Colobolomin (sp?) type because we could not find the methyl form anywhere in Chicago! We didn't want to delay treatment and we were afraid to order B12 serum on the internet. We switched to the methyl form for the past 10 doses and fingers are crossed that the progression has stopped.

- I am also taking 200mg's of Neurontin 3x a day; I have no idea if this is helping or if side effects could be adding to twitching and muscle spasms. Between the high-dose B12 and Neurontin there is a long list of side effects.

I am also taking oral B complex, fish oil, D, potassium, and a multi vitamin. I also have Jarrow chewable methyl B12 (recommended on Nuerotalk ... I pop one of these every morning on an empty stomach).

Also, just a note that I seem to have good days and bad days that sort of "cycle" every 48 hours. I'm not sure if that is expected in the healing process? On a bad day I wake up with full blown symptoms - trembling, twitching and burning sensation. When I get up I am extremely fatigued and legs are very heavy. I also am paranoid and hopeless on these days - but as all of you are doing ... I "carry on".

Thank you again for your help ... I am truly grateful!

Not sure if it's Neurontin or b12 ...
 

... but muscle jerks have lessened although still there when I relax in bed at night (or, try to!). I am 2 months into this and just completed 21 1000MG b12 injections. I have good days and bad days; the bad days are pretty bad: I feel like I'm wearing tall boots that are way too tight and there seems no way to get past the feeling. It lasts all day no matter what I do. Also, muscle pain, pins and needles and days like these generate lots of FEAR.

I am learning from reading various posts to be careful of antibiotics and to "keep calm and carry on" as the Brits say. I have read from many of you that stress heightens symptoms.

I do wonder if all PN sufferers experience good days and bad days? And, is stiffness common in the early stages of the disease? I can live with this on good days (which are not TOTALLY good, but manageable).

Thank you again to ALL !

My flares revolve around barometer changes... fast dipping lows seem to really set me off. Sometimes I will need 1/2 tramadol on those nights.

So will MSG in foods. I try to stay away from it, but eating out always seems to have MSG in everything, so I will have a rough night or two after MSG exposure.

The weather affects my symptoms too. You can't control the weather but try to reduce/eliminate sugar from your diet. The night shades bother some people, me included, and gluten makes it worse for some people too, again, I include myself.

As others have said, diet is key, so is stress/anxiety. Easier said than done, sure. But if you can control stress and anxiety, it will likely improve things. It certainly won't make it worse. Radical diet and general lifestyle changes have made a huge difference for me. Some days my symptoms are worse, but never nearly as bad as when it all started. Supplementation is key too. Good luck!

I noticed stimulants like caffiene,ig coffee and milk tea,sugar makes the jerks worst. I also notice im more sensitive to effects, or maybe because im not used to caffiene since i dont drink it everyday.