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-   -   is this perpheral neuropathy or what? (https://www.neurotalk.org/peripheral-neuropathy/175433-perpheral-neuropathy.html)

echoes long ago 08-26-2012 09:09 PM

mymarie, pn affects people differently. there is no way to predict as to wether you will ever have pain, as to wether the areas affected will expand, stay the same or even get better. some people have numbness, or numbness and pain, or pain, or burning or tingling etc. two people can have the same type of pn and have completely different symptoms.

Stacy2012 08-26-2012 10:00 PM

I would consider your B12 low at that number.

But that is just my opinion.

I do not trust a blood B12 because it includes active and inactive B12 in the gut. Only active B12 count test is more acurate. For me personally, my last B12 blood test was a waste, it was 4,000 and that is because I didn't stop taking all of my B's before the test.

Regardless what result is, when I take enuf B12 my body tells me, not a test. But your number was at the low end, in my opinion.

I was tested for diabetes and dr said no. But I bought a monitor and believe I have had spikes for years when eating a heavy carb meal, and spikes are as deadly as actual diabetes for affecting nerves. My research has shown me that most people have been diabetic long before any dr or test will confirm it.

It's just important to not get caught up in "within normal ranges" is my best advice for myself. Normal is not so normal.

mrsD 08-27-2012 04:58 AM

Thanks for the level...it is indeed low. 400 is now the recommended cut off point for needing B12 supplements.
Here is a medical educational site for DOCTORS which is easy to understand for everyone actually. It explains the new 400 cut off point.
http://www.aafp.org/afp/2003/0301/p979.html
Notice that this paper was posted in 2003... it is a shame that physicians remain glued to the old lab ranges even today.
I'd start on some activated B12 called methylcobalamin, ASAP.
Here is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

39 yrs is a LONG time for Dilantin. Many patients today, do not use this drug, because of the toxic potential it can show over time in people. I've seen some patients also get liver functions damaged with long term use.



Quote:

Originally Posted by mymarie (Post 909136)
I have wondered if the Dilantin has added to this. I have been on this med for almost 39 years. I said my labs were wnl as I have the results with the normals on the results. My B12 was 319 with normal range listed as 211-946.
I also wonder if my nasty smoking habit has added to this as well. It just feels related to something in pelvic/groin area alot of times. as I have said I just don't know. Think I am falling apart. I was also really watching how I ate until right before this started and went back on the bad carbs and junk. Some of it is common sense but I just really want to know if it is pn and why?


mymarie 08-27-2012 05:21 AM

Quote:

Originally Posted by mrsD (Post 909196)
Thanks for the level...it is indeed low. 400 is now the recommended cut off point for needing B12 supplements.
Here is a medical educational site for DOCTORS which is easy to understand for everyone actually. It explains the new 400 cut off point.

Notice that this paper was posted in 2003... it is a shame that physicians remain glued to the old lab ranges even today.
I'd start on some activated B12 called methylcobalamin, ASAP.
Here is our B12 thread:
]

39 yrs is a LONG time for Dilantin. Many patients today, do not use this drug, because of the toxic potential it can show over time in people. I've seen some patients also get liver functions damaged with long term use.

Yes it is a long time. I had a neuro wanting to change me to another med but after talking with my pcp and really thinking about I came to the conclusion that I have "danced" with this med for years and we are quite use to each other. I have been seizure free for the last 25+years so why change and take the chance of having a seizure while driving or at work or just anytime. Believe me the long term affects scare me but I feel I have no choice but to keep taking this med.

mrsD 08-27-2012 07:35 AM

Well, I do think that the "new" treatment for seizures is to
consider discontinuing the meds when a patient has been seizure free for a certain number of years.
Here is some more info to discuss with your doctor... don't discontinue on your own, and if you decide to with doctor's permission a very slow taper is safest, based on the papers published so far on this subject.

Example:
http://www.ncbi.nlm.nih.gov/pubmed/16530017

While this factor is still controversial, it does work for some.

Perhaps you could visit our Epilepsy forum and ask there about discontinuance.

One factor that must be considered is that the drugs actually lower the seizure threshold for some people. This is the main reason phenobarbital is no longer used for infants and children who have febrile seizures. I can recall dispensing it by the gallons per week, in the 70's. Now it is rare to use phenobarbital at all for anyone! It was discovered quite a while ago that these children could become lifelong seizure patients if given phenobarbital as children to prevent fever induced seizures. So the concept of lowering seizure threshold is important and demonstrates the sensitivity of the nervous system in general.

I do think you should start methylB12 now, however, as your results show a need for it.

Long term Dilantin depletes:
Biotin
Calcium
Folate
Vitamin B1 (thiamine)
B12
Vitamin D
Vitamin K

So your chronic use of Dilantin may have created a need to supplement any or all of these nutrients.
This is from the reference I use, Drug-Induced Nutrient Depletion Handbook by Pelton and LaValle 2nd ed.

http://drugs.wellitude.com/2012/01/26/phenytoin/
This link reiterates the reference I have.


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