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Old 12-16-2015, 08:48 PM #1
rec60661 rec60661 is offline
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Default Muscles jump ... "myoclonus?"

I was up all night with jumping, twitching muscles. My ankles, shoulders, and legs would jump bilaterally. I was just diagnosed with peripheral neuropathy a couple of weeks ago. I'm not diabetic and suspect a B12 deficiency because I have been taking a reflux drug for over 10 years and Metformin for the past two years.

Is muscle jumping something I should expect with PN ?
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Old 12-17-2015, 10:03 AM #2
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Originally Posted by rec60661 View Post
I was up all night with jumping, twitching muscles. My ankles, shoulders, and legs would jump bilaterally. I was just diagnosed with peripheral neuropathy a couple of weeks ago. I'm not diabetic and suspect a B12 deficiency because I have been taking a reflux drug for over 10 years and Metformin for the past two years.

Is muscle jumping something I should expect with PN ?
Could you explain What you mean by muscle jumping? Festiculations? Restless leg? I also took Acid blockers for 10 years. I would get spasms, charlie horses and some festiculations (sic) myself. Somehow I think there's a magnesium deficiency part in this as well.

I almost NEVER get Reflux anymore since changing to a reduced sugar, high protein, more whole food based diet. Havent taken a PREVACID in 2 years.

BTW - IF you're not a diabetic why were you taking metformin?
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

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Old 12-17-2015, 03:10 PM #3
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Quote:
Originally Posted by rec60661 View Post
I was up all night with jumping, twitching muscles. My ankles, shoulders, and legs would jump bilaterally. I was just diagnosed with peripheral neuropathy a couple of weeks ago. I'm not diabetic and suspect a B12 deficiency because I have been taking a reflux drug for over 10 years and Metformin for the past two years.

Is muscle jumping something I should expect with PN ?
as well as Magnesium could help. If your urine is yellow, you need to drink water until it gets pale. I was on Metformin for years and my b-12 was on the floor at 119. 400 is low end of acceptable, 900+ is where you want to be. Metformin users may have to supplement b-12 as long as they take the medication. I don't know the science of absorbsion but I always get the b-12 that is "Methyl" in the name. I took monthly shots also to boost the numbers. Good Luck, Ken in Texas. P.S. You need to stop supplementation about a week in advance of testing your numbers no matter what you are supplementing.
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Old 12-17-2015, 08:30 PM #4
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Thanks so much for the info on Magnesium and I really DO need to hydrate.

Actually, my B12 level is around 800 but my folate is very high. I have learned that the serum b12 test is unreliable in detecting "activated" b12, so rather than do nothing, we're going to do b12 injections. No harm and it may help. A couple of PN articles I read suggest that if someone is symptomatic you should assume b-12 is the issue if it is under 1000.

I was taking Metformin to "prevent" diabetes which turned out to be one of the dumbest things I've done in my life. It seems the combo of an antacid for many years and Metformin for 18 months delivered a double whammy on my B12.

I start the B12 infections tomorrow and hoping beyond hope that it helps. I am so fearful that I am waking up feeling my nerves vibrating all over my body and have difficulty walking when I get up. I'm on a very rough road right now and am very VERY grateful for both of you providing this info!
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Old 12-17-2015, 09:59 PM #5
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Default Magnesium, hydration and diet

In the beginning I would get those twitches every night, (but not in so many body parts at the same time).

The following things helped reduce my night twitches.

Slow mag 2 times a day (morning & night)
Epsom Salt baths
Morton's Epsom Lotion
Potassium: I like coconut water, but it is high in sugar so I am careful not to overdo it.

As far as recovering from acid blockers, what worked for me was eating alkaline foods and avoiding acid producing foods. I had been put on medication that stopped acid production because a doctor read the wrong file and thought I had a stomach ulcer. It was a terrible mistake that effected my digestion for a long time. To help my GI tract recover I basically ate lots of avocado, artichokes, broccoli, fresh ginger, mushrooms, cucumbers, coconuts, some fruit (pineapple, guava). I made a lot of shakes. I am not vegetarian, but I limited meat during that time. Just adding lemon juice to your water can help. PM me if you want more info on this.

Hope this helps.
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Old 12-18-2015, 01:29 PM #6
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Quote:
Originally Posted by rec60661 View Post
Thanks so much for the info on Magnesium and I really DO need to hydrate.

Actually, my B12 level is around 800 but my folate is very high. I have learned that the serum b12 test is unreliable in detecting "activated" b12, so rather than do nothing, we're going to do b12 injections. No harm and it may help. A couple of PN articles I read suggest that if someone is symptomatic you should assume b-12 is the issue if it is under 1000.

I was taking Metformin to "prevent" diabetes which turned out to be one of the dumbest things I've done in my life. It seems the combo of an antacid for many years and Metformin for 18 months delivered a double whammy on my B12.

I start the B12 infections tomorrow and hoping beyond hope that it helps. I am so fearful that I am waking up feeling my nerves vibrating all over my body and have difficulty walking when I get up. I'm on a very rough road right now and am very VERY grateful for both of you providing this info!
I am not familiar with folate and related issues but the 800 on b-12 sounds high enough to not be symptomatic. Don't be surprised if your balance and gait take a hit. Keep us abreast of the meds you take and the pain you are experiencing if any. Your issue might be due to the ant-acid alone. You can use the search function and read about antacids. I think there are posters that attribute their PN to antacid use. Are you getting a Neuro appt? There are lots of people with experience here, with the will to help. We may ask a lot of questions. Good Luck, Ken in Texas.
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Old 12-18-2015, 02:45 PM #7
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Quote:
Originally Posted by rec60661 View Post
Thanks so much for the info on Magnesium and I really DO need to hydrate.

Actually, my B12 level is around 800 but my folate is very high. I have learned that the serum b12 test is unreliable in detecting "activated" b12, so rather than do nothing, we're going to do b12 injections. No harm and it may help. A couple of PN articles I read suggest that if someone is symptomatic you should assume b-12 is the issue if it is under 1000.

I was taking Metformin to "prevent" diabetes which turned out to be one of the dumbest things I've done in my life. It seems the combo of an antacid for many years and Metformin for 18 months delivered a double whammy on my B12.

I start the B12 infections tomorrow and hoping beyond hope that it helps. I am so fearful that I am waking up feeling my nerves vibrating all over my body and have difficulty walking when I get up. I'm on a very rough road right now and am very VERY grateful for both of you providing this info!

Nothing like getting a disease from medicine and then going to a doctor seeking medicine to relieve you of the pain caused by the other medicine eh?.

If the B12 fixes your issue be thankful. Even taking it orally is easy and effective and inexpensive enough to take every day for the rest of your life if need be.
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

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Old 12-29-2015, 07:20 AM #8
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Quote:
Originally Posted by rec60661 View Post
Thanks so much for the info on Magnesium and I really DO need to hydrate.

Actually, my B12 level is around 800 but my folate is very high. I have learned that the serum b12 test is unreliable in detecting "activated" b12, so rather than do nothing, we're going to do b12 injections. No harm and it may help. A couple of PN articles I read suggest that if someone is symptomatic you should assume b-12 is the issue if it is under 1000.

I was taking Metformin to "prevent" diabetes which turned out to be one of the dumbest things I've done in my life. It seems the combo of an antacid for many years and Metformin for 18 months delivered a double whammy on my B12.

I start the B12 infections tomorrow and hoping beyond hope that it helps. I am so fearful that I am waking up feeling my nerves vibrating all over my body and have difficulty walking when I get up. I'm on a very rough road right now and am very VERY grateful for both of you providing this info!

I understand what you mean for the muscle twitching. I also am on Metformin to prevent diabetes since my A1C is borderline and I have started B12 shots every 2 weeks because my level is 273. My muscle issues seem to be more of a spasm that causes my legs to jump bilaterally, worse if I over do it. I am having to walk with a walker to help keep me from falling since I have no feeling from just below my knees down. I have been diagnosed with Axonal Sensory-Motor bilateral peripheral polyneuropathy. I have had 2 major episodes that were more like grand mall seizures but I knew what was going on. The 1st lasted an hour and a half that the 2nd for an hour. It felt like a ran a marathon and just needed to sleep. I am working to find the cause in order to try to stop the progression. I pray you find the cause of yours since I know that the spasms/twitching sucks. Good Luck!!
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Old 12-30-2015, 06:03 PM #9
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Thanks to all for the VERY helpful info. I am hoping beyond hope that b12 methyl injections will do the trick. I was SO EXCITED today when I felt pain in my little toe. I am numb from the knees down (as CCWalker describes below).

Since it has come on so gradually and with the metformin-protonix combo over many years ... it does point to b12 deficiency. After 13 daily shots I think the progression has stopped.

I am taking Neurontin for pain and to control twitching muscles; I am worried that an anti-seizure med may interfere with b12 therapy? Not sure - don't trust any meds of docs right now!
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Old 01-02-2016, 03:35 AM #10
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Originally Posted by rec60661 View Post
I was up all night with jumping, twitching muscles. My ankles, shoulders, and legs would jump bilaterally. I was just diagnosed with peripheral neuropathy a couple of weeks ago. I'm not diabetic and suspect a B12 deficiency because I have been taking a reflux drug for over 10 years and Metformin for the past two years.

Is muscle jumping something I should expect with PN ?
Myclonus, is like muscle jerks which cannot be controlled mentally. Something like whole limb jerking. I had myclonus for about 2 weeks, with the onset of my neuropathy, which is still unknown and undiagnosed. Do you get the jerks, in different positions? lying down, lying down facing left or right, or on your back?
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