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Old 01-04-2016, 06:33 PM #1
rec60661 rec60661 is offline
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Join Date: Dec 2015
Posts: 35
8 yr Member
rec60661 rec60661 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 35
8 yr Member
Default 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!
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