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Old 06-01-2013, 04:19 AM #1
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Frown First Trigeminal Neuralgia and now this...

Hello all,

I'm new to this group but have been a member of the Trigeminal Neuralgia group here for some time. After being diagnosed with Trigeminal Neuralgia back in 2010, I was diagnosed with Peripheral Neuropathy (specifically Radial Neuropathy) 3 weeks ago after waking up one morning with the typical limp wrist, loss of control of my fingers and numbness in my right arm. My right hand has been going to sleep/numb with a pins and needles sensation most of the time for the past 2 years. I never really had any pain up until a week ago. Now I now have muscle pain in my right bicep and right forearm muscles. Also have pain in the right elbow and right shoulder joint. Could these pains be caused by the Radial Neuropathy?

I spent 4 days in the hospital while they tried to find out the root cause of the problem. After doing a lot of tests, the treating Neurologist does not have any idea what the cause could be. I do not know if they checked my B12 levels but one of the tests they did do was blood proteins. He stated all tests were normal. I have been taking Carbamazepine for 3 years now to help control the TN but it apparently it is not helping with the Radial neuropathy.

Can I start taking a B12 supplement on my own without causing any problems?

Is this kind of like the Trigeminal Neuralgia and they may not know why some people have it and others don't?

The Trigeminal Neuralgia was the worst debilitating pain I have ever felt.

I'm a 59 year old male and it looks like my whole nervous system is breaking down.

Thanks for reading this....
Ken
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Old 06-01-2013, 05:41 AM #2
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Lightbulb

Yes, you can take the B12 on your own. We are very fortunate that B12 is safe, and high doses don't cause problems.

Without a test I'd start at 1mg a day of methylcobalamin the active form, and take on an empty stomach. About 13mcg of this will be absorbed even if you don't have active intrinsic factor.

You could have some compressive issue in your neck. Or at the thoracic outlet in the upper chest.

Here is our TOS forum that you can read and ask questions. Some doctors don't understand this disorder.
http://neurotalk.psychcentral.com/forum24.html

Carbamazepine can be toxic over time. It affects sodium levels, and can cause blood abnormalities. Were you tested for these issues?
http://emedicine.medscape.com/article/813654-overview
you may have to join medscape to view this article, but that is free and easy. It is very complete. Vasculitis, is listed as one sign of toxicity. This can affect the nerves.

Don't discontinue this drug yourself suddenly. It needs to be tapered off carefully. Discuss this with your doctor.
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Old 06-01-2013, 06:52 AM #3
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Quote:
Originally Posted by mrsD View Post
Yes, you can take the B12 on your own. We are very fortunate that B12 is safe, and high doses don't cause problems.

Without a test I'd start at 1mg a day of methylcobalamin the active form, and take on an empty stomach. About 13mcg of this will be absorbed even if you don't have active intrinsic factor.

You could have some compressive issue in your neck. Or at the thoracic outlet in the upper chest.

Here is our TOS forum that you can read and ask questions. Some doctors don't understand this disorder.
http://neurotalk.psychcentral.com/forum24.html

Carbamazepine can be toxic over time. It affects sodium levels, and can cause blood abnormalities. Were you tested for these issues?
http://emedicine.medscape.com/article/813654-overview
you may have to join medscape to view this article, but that is free and easy. It is very complete. Vasculitis, is listed as one sign of toxicity. This can affect the nerves.

Don't discontinue this drug yourself suddenly. It needs to be tapered off carefully. Discuss this with your doctor.
Thanks for the reply mrsD

I will pickup some B12 and start taking it.

I might have a problem in my upper chest. I do have pain on and off high between my shoulder blades on my back. I did tell the doctors about it while in the hospital.

Yea I have blood tests because of the carbamazepine about every 6 months. I have been warned not to stop taking it suddenly and I have tapered down and ramped back up over time over the past 3 years as needed.

Thanks for the links and the great information.

Oh, methylcobalamin is that what I need to look for specifically and can I get it somewhere like walmart?
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Old 06-01-2013, 07:39 AM #4
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Lightbulb

Walgreens has it now... by Nature's Bounty.

Costco and Sam's club have just started carrying it.
You might only find 5mg... and not the 1mg. You can take the 5mg twice a week, etc. (or even every day if you want)

methyl is just entering local stores this year. But I don't know if every pharmacy has it.

You could call Walmart up and ask at the pharmacy.

You can find methyl at iherb.com, Puritan's Pride, Swanson's,
Vitacost, and Amazon online. All very affordable.
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Old 06-01-2013, 07:51 AM #5
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Thanks again for all the helpful information.

I will pick some up today.
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