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Old 05-27-2013, 07:31 AM #1
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Confused newly diagnosed

So my husband Dean has a vp shunt and has started having seizures. which took us to a neurologist, who on initial exam noted something with dean's feet. sent us for a nerve conduction test, which shows severe peripheral neuropathy. He is not diabetic or an alcoholic. so unsure where this has come from. He doesn't have the pain just numbness. He remembers his feet burning a lot as a child. since then he has had several episodes where he has fallen, some we think are seizure related but wondering if the neuropathy is playing a role in the falling as well? going for a sleep study with EEG on wed. Any advise or info would be greatly appreciated. We are very confused by all this.
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Old 05-27-2013, 08:30 AM #2
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Lightbulb

I would get that B12 checked. And make sure you get the numbers for the result. Should be over 400pg/ml.

Here is a video on B12 and how sneaky it can be and how doctors still to this day miss it:

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

The use of activated B12 called methylcobalamin is discussed on my long B12 thread, more in detail.
http://neurotalk.psychcentral.com/thread85103.html

Development in childhood of burning feet, may point to a hereditary type, which is not treatable at this time.

Also think back to any drugs used back then. Drugs can cause PN.
Dilantin for seizures is one. Some antibiotics also.

People can have the DNA mutation called MTHFR... which blocks activation of folic acid and B12 in food. People with this will show typical low B12 symptoms, but may test fairly normally.
For them doing a MMA test and/or a homocysteine level will reveal this problem. There is a DNA test now for it that is not too expensive, as well.

This is pretty common, 10-30% of Americans can have this DNA problem.
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Lisa14 (05-28-2013), Sallysblooms (05-27-2013)
Old 05-29-2013, 08:53 PM #3
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thanks for the info and video mrsD. Dean had his b12 checked on 4/4/13 and was 504. folic acid was 9.6 I started giving him a 1000mg b12 tab daily. No one in his family has neuropathy that we know of. He remembers as a child running a low grade fever all summer, but doesn't recall being treated for it. His parents didn't believe in going to the dr. unless you were dying. tough old farmers! waiting to see another neurologist for the neuropathy. hopefully he will have some answers.
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Old 05-29-2013, 09:39 PM #4
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Such a great video Mrs.D!
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Old 05-30-2013, 08:16 AM #5
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Wink

A member here, Jason, found that video... I am only the messenger!

It really helps to get the point across... that doctors are not helping people much still to this day, and missing serious B12 abnormalities.
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Old 05-30-2013, 11:35 AM #6
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Thanks Jason. I have been seeing it on a CFS forum and forums for Dysautonomia. I was FINALLY found to have low B12 years ago. Years were wasted. Doctors need to know about the SIMPLE things that are so serious. I finally found great doctors.
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Old 05-30-2013, 01:26 PM #7
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Lightbulb

When I watched the video for the first time, there were about 500 views only. I see now there are over 30,000 views. So discussing it here over and over may be helping people to find it.

We get good Google coverage for NT, so the more who learn about it the better!
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