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Old 10-22-2015, 06:11 PM #11
CCWalker CCWalker is offline
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Originally Posted by mrsD View Post
Did they test your B12? Are you at 400pg/ml or above?.

Did they test you for the MTHFR mutation? This DNA
Mutation affects methylation in the body.

Do you or did you take statins for cholesterol?
Did you take fluoroqinolones (antibiotics) or other
Drugs long term? Some cause nerve damage.

Exposure to heavy metals can cause a rapidly progressive
Neuropathy...there are tests for this.


My B12 was 360 then 529, I am going to have my Dr retest both B12 and B6 next week My Magnesium was 2.1 and My A1C is 5.9. I have not had any DNA test done but that is on my list to talk to me Dr about, AI do take Statins but was on them for 2 yrs before starting to see signs if the PN. I have never been exposed to heavy metals that I know of. Thank you so much. You have given me a lot to go with to my Dr. I will keep you posted,
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Old 10-22-2015, 06:25 PM #12
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I have non diabetic PN, but I have thought about what causes it, till finally my internist said "whats the difference". I have had all the testing and I think its due to heavy alcohol consumption. But at the end of the day I still have it...I might never know..some cases are idiopathic.

Trying to cope with this disease some days ae harder than others, for me being active works...

Eyeball


I understand where you are coming from about "what is the difference" but I don't drink, not a diabetic and with mine being progressive, I am worried about how far it is going to progress. If we can find the cause, maybe...just maybe we can stop the progression. I do know that I may never find the answer but telling me, after a few lab tests, that there is nothing we can do but treat the symptoms just doesn't settle well. I am hoping to use this forum to gain knowledge of my condition and have people who understand what I am going through to cope. Thank you for responding and hopefully we can both learn to cope with this
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Old 10-22-2015, 06:26 PM #13
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Lightbulb

Stop taking your B12 or any other Bcomplex (including fortified foods) about a week before your test, to get more accurate results.

Continuing with statins, leaves you vulnerable to more damage even if you take most supplements. One critical thing you must do is take a quality CoQ-10 supplement because statins block its manufacture in your liver. You cannot live without this vital substance. The newer more soluble CoQ-10s are Qunol and Q-gel.
100mg of these a day are about equal to 300mg of the older type.
Qunol is at Costco and WalMart, at reasonable prices.

And... with an A1C of 5.9 you are close to type II diabetes. 6.4 is a turning point for many doctors to diagnose you with diabetes.
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Old 10-22-2015, 06:40 PM #14
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Originally Posted by mrsD View Post
Stop taking your B12 or any other Bcomplex (including fortified foods) about a week before your test, to get more accurate results.

Continuing with statins, leaves you vulnerable to more damage even if you take most supplements. One critical thing you must do is take a quality CoQ-10 supplement because statins block its manufacture in your liver. You cannot live without this vital substance. The newer more soluble CoQ-10s are Qunol and Q-gel.
100mg of these a day are about equal to 300mg of the older type.
Qunol is at Costco and WalMart, at reasonable prices.

And... with an A1C of 5.9 you are close to type II diabetes. 6.4 is a turning point for many doctors to diagnose you with diabetes.



Thank you so much MrsD I had no idea I was so close to being a diabetic. I will look into the CoQ-10. I know that I am getting a lot of information and will have to try things one at a time to see what works.
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Old 10-22-2015, 07:16 PM #15
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My A1C is 5.9.
You're pre-diabetic by all standards I've encountered, including the American Association of Clinical Endocrinologists. They say anything above 5.5% is pre-diabetic.

Neuropathy or not, it's time to make dietary changes.
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Old 10-22-2015, 07:43 PM #16
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Originally Posted by CCWalker View Post
I understand where you are coming from about "what is the difference" but I don't drink, not a diabetic and with mine being progressive, I am worried about how far it is going to progress. If we can find the cause, maybe...just maybe we can stop the progression. I do know that I may never find the answer but telling me, after a few lab tests, that there is nothing we can do but treat the symptoms just doesn't settle well. I am hoping to use this forum to gain knowledge of my condition and have people who understand what I am going through to cope. Thank you for responding and hopefully we can both learn to cope with this
I am in complete agreement with you and am attempting the same thing. After a few general tests that were normal my neurologist was only willing to treat my symptoms with drugs. He said what he couldn't do was cure me because he didn't know the cause but he could try to help manage my symptoms. I fired him and am trying other doctors.
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Old 10-23-2015, 12:36 AM #17
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Stop taking your B12 or any other Bcomplex (including fortified foods) about a week before your test, to get more accurate results.
Does this apply to testing for B6 also? My doctor ordered this today but I held off because I wasn't sure whether that applied to other B vitamins in addition to B12.
Thank you.
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Old 10-23-2015, 07:37 AM #18
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Lightbulb

Yes, I would also stop other nutrients before testing.

This is because the ranges were done on "selected normals" who were NOT using vitamins or minerals. Anyone taking vitamins will score an artificial high and give most doctors the heebeejeebees.

B6 is held in the body longer than most of the other B's (except for 12 which is stored in the liver). B6 is converted to pyridoxal and held in muscles for a short time, as it is critical for muscle metabolism of glycogen. So you might want to stop B6 for 2 weeks. Doctors REALLY get heebeejeebees over elevations of this one.
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Old 10-27-2015, 04:45 PM #19
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I am not diabetic...every cause under the sun was ruled out with more tests than anyone can imagine (3 MRI and 2 CT scans in One morning). Spinal taps, many other tests. Including just recently Charcot Marie Tooth which I do NOT have and could have told the neurologist..but it was a test I hadn't had in the 5 years of testing.

I was, however, diagnosed with a Deficienct Immune System in 2011, and my Duke Immunologist believes that my immune System may have attacked the nerves in my legs (and my small fiber nerves) AND my moisture system (tears and saliva) and my lungs, AND my bladder, all of which are damaged, and for none which can a cause for the damage be found

My Immunologist (Duke research super star) thinks that my Immune System Directly attacks my organs and systems rather than using auto antibodies as is the case in true Auto Immune conditions.

The key is that when the usual suspects are ruled out, so are the usual treatments. I just treat the pain and discomfort and try to live with my disability.

At least I'm an old lady and am not missing out on life

Hugs, ElaineD
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Old 10-27-2015, 07:23 PM #20
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I was, however, diagnosed with a Deficienct Immune System in 2011, and my Duke Immunologist believes that my immune System may have attacked the nerves in my legs (and my small fiber nerves) AND my moisture system (tears and saliva) and my lungs, AND my bladder, all of which are damaged, and for none which can a cause for the damage be found

My Immunologist (Duke research super star) thinks that my Immune System Directly attacks my organs and systems rather than using auto antibodies as is the case in true Auto Immune conditions.
That is interesting that your Immunologist came up with this. What exactly is a Deficient Immune System, if you wouldn't mind explaining a little more? Is it a diagnosis or a general term to describe symptoms?
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