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-   -   Bad Biopsy (https://www.neurotalk.org/peripheral-neuropathy/173215-bad-biopsy.html)

mrsD 07-15-2012 07:15 AM

Quote:

Originally Posted by duarte1985 (Post 897553)
So know I have severe neuropathy, plantar fachitis and now I have horrible phantom pain. I am looking for help but help is making me worse. My neurolgist has made no effort. to help me. My neuropathy is progressing which he agreed , he said if we don't do something fast I might be able to walk. There has to be a way to stop this pain its almost debilitating right now.

Have you had a B12 test? Do you know the numerical result?
I'd have this tested ASAP and make sure you are above 400 in US units.

echoes long ago 07-15-2012 10:16 AM

way back in 2003 i was diagnosed via emg/ncs with peripheral neuropathy. the neurologist that did the test referred me to columbia presbyterian hospital in manhattan. the first thing that they wanted to do to look for a cause, before blood tests, glucose tolerance tests, a1c, spinal tap or anything else was a nerve biopsy on the sural nerve. I read up on it on the braintalk peripheral neuropathy forum which was the active one at the time with some of the same posters who are here still, and ran not walked to another neurologist who gave me a full testing workup without the sural nerve biopsy.
you must become fully involved in understanding and researching the testing, diagnosis and treatment of your medical issues, because it is you who will be the one who will be suffering or debilitated when unneeded or damaging procedures, surgeries or Rx's are done or presecribed to you.

billygee 07-17-2012 08:49 AM

I have peripheral neuropathy & inflamatory muscle process in my legs and my left leg is worse.Iwent thru all the blood test and mri of the lumbar spine, left femur the test came back normal execpt my b-12 which was at 275.So the doc at my va recomended I had both nerve & muscle biopsy done which i'm glad i did becauce it showed a problem with the fibers and red blood cells ?? and it has taken us into a new direction of blood tests and i wont know till next month what the results are.The only pain i have in my leg from removing the nerve & muscle is when i cross my left leg.If your doc what to have the biospys done i'd say yes, go for it it my show something or it may not.

mrsD 07-17-2012 10:03 AM

You need to start B12 NOW.... 5mg methylcobalamin daily on an empty stomach. It is better than injections and may help. Methyl B12 is the ACTIVE form and superior to cyanocobalamin. Some people cannot methylate cyano so it doesn't work for those with genetic failures in methylation.

iherb.com, Puritan's, Swanson's, amazon have it for about 10 cents or so a day. Get tested in 3 months, and you should be over 1000 for best results.

Did your doctor offer B12 to you? Anything below 400 is considered abnormal today according to new treatment protocols. Other countries have been treating these lows for many years now, but the US is really behind for some reason.

billygee 07-17-2012 10:22 AM

Quote:

Originally Posted by mrsD (Post 898261)
You need to start B12 NOW.... 5mg methylcobalamin daily on an empty stomach. It is better than injections and may help. Methyl B12 is the ACTIVE form and superior to cyanocobalamin. Some people cannot methylate cyano so it doesn't work for those with genetic failures in methylation.

iherb.com, Puritan's, Swanson's, amazon have it for about 10 cents or so a day. Get tested in 3 months, and you should be over 1000 for best results.

Did your doctor offer B12 to you? Anything below 400 is considered abnormal today according to new treatment protocols. Other countries have been treating these lows for many years now, but the US is really behind for some reason.

275 is a low normal.They talked about b-12 shots.I'm taking 1000mcg B-12 tablet aday.For right now there trying to firgure out what started all this crap.All i can say i'm glad i went with the biopsy's.By the new round of blood test it sounds like my blood was exposed to something.

i looked at the wrong number. B-12 is 379 if i'm looking at lab results correctly.Sorry about that. Removal of left sural nerve and adjacent muscle for biopsy.

billygee 07-17-2012 10:35 AM

Thanks Mrs.D I'll order Methyl B12 . Thanks for the info.

mrsD 07-17-2012 10:54 AM

Sural nerve biopsy can leave you with permanent pain. Did you read all the posts on this thread?

Skin punch biopsy is a better alternative.

Even at 379 you are below the acceptable low of 400 today.

People with neurological issues can need more B12 than others.

Please read this:
http://neurotalk.psychcentral.com/post698522-70.html

and
http://www.aafp.org/afp/2003/0301/p979.html

Injections are typically cyano form, which is not active. Some people lack the genetic ability to utilize it and so it does not work well. The active form is methyl and that works much fast and better.

billygee 07-17-2012 11:17 AM

Quote:

Originally Posted by mrsD (Post 898269)
Sural nerve biopsy can leave you with permanent pain. Did you read all the posts on this thread?

Skin punch biopsy is a better alternative.

Even at 379 you are below the acceptable low of 400 today.

People with neurological issues can need more B12 than others.

Please read this:
http://neurotalk.psychcentral.com/post698522-70.html

and
http://www.aafp.org/afp/2003/0301/p979.html

Injections are typically cyano form, which is not active. Some people lack the genetic ability to utilize it and so it does not work well. The active form is methyl and that works much fast and better.

The only pain i have is when i cross my leg, i can live with that.The biopsy's they had to do and what there looking for i have no idea.
All i know is that the blood test are more specific & deeper. 3hr glocuse, cooper, either vit-c or hep-c, toxins & other test.I ask the nurse if this has anything to with agent orange, all she was yes & no.The base's i was station at were cleared by the epa. What labs there sending out the samples to there not saying.I'm just along for the ride. lol All i can say for me the nerve & muscle biopsy's was a must. Sorry to hijack duarte1985 post.

duarte1985 07-17-2012 04:38 PM

Not a problem billygee! MrsD the VA tells me its been done multiple times looking for my B12 that is by I will get a release tommorow.

billygee 07-17-2012 05:35 PM

Quote:

Originally Posted by duarte1985 (Post 898382)
Not a problem billygee! MrsD the VA tells me its been done multiple times looking for my B12 that is by I will get a release tommorow.

I forgot what the office is called, you can get your medical records at the vamc.Everything is on computer now.

If you ever need you get your medical records when you where in the service www.NPRC.Vetrecs@nara.gov


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