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Old 09-02-2013, 10:23 AM #21
KAKNJOE KAKNJOE is offline
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Quote:
Originally Posted by mrsD View Post
There is a pretty common genetic error in methylation of
both cobalamin and folic acid 10 to 30% cannot do this.
It is tested for with a DNA test---23andme online does this
For 99 dollars... No doctor required.

Did you have any blood work done to see if you need more
B12?

What were the results if you did?

I am on an iPhone so linking is difficult for me now.

But our PN forum on the first 2 pages has two threads by
Muiriann on methylation (MTHFR) and Suzy Cohen's
Blog explaining more. My B12 thread in the stickies on
page one there has all you need to know about B12.

I won't be home until after LaborDay.
I am new to this site so you may need alot of patience. I am desperate for someone to give me guidance because I am not getting anywhere with GP who I really love but for some reason we're missing mark. Last year, aug 2012, i decided to do bloodwork myself because all i kept getting was i'm stressed. The b12 came back 347. My folate was 11. My iron was low. My vit d was low. Went back to the doctor and put on presciption vit d and said to take b12. Got methyl b12 at gnc. starting feeling better. Then got an attack in march 2013Weak. I had not taken the vitamins in 3 weeks. Headache bad. Fainting. severe confusion. on and on. Went to hospital for ms. Negative. For stroke. Negative. Said could find nothing. Went back on b12 sublingually. Felt better. Not back to normal. Just had another attack about 10 days ago. Severe neuropathy. anxiety. extremely soar muscles. Burning. on and on. Cold hands alternating with swollen hands. Dr said it was pernicious anemia. went on B12 injections of methly b12 from *admin edit* because doctor would not prescribed. Felt good yesterday. (better i mean). feeling crappy again today and last nite. Couldn't sleep. Took melatonin. Nope. took quarter of ambien. Nope. Took a clonopin. Slept to 5 hours. Woke up to same thing. slight headache. Forgot to say, went to GNC for methly-folate acid. Took one yesterday and day before. Tested postive for MTHTR (?). have the C677 one. Hetergenous. Am I missing something to get rid of this? I am so frustrated. I hate feeling this way. I think it's a b12 deficiency. could it be something else and I can I get better. If you can give me any suggestions I would be so grateful. I made an appointment with a kineologist this week. I just don't want to take anymore medicine. I take zoloft for the past 17 years and clonopin as needed for anxiety. Which is usually only a couple days a month. Last night I had alot of anxiety. Thank you so much for even listening. Sincerely, Kathleen
age 50. female. if you need to know that.

Last edited by Chemar; 09-02-2013 at 11:26 AM. Reason: sorry no links allowed for new members
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Old 09-03-2013, 06:46 AM #22
glenntaj glenntaj is offline
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Default Has anybody been looking into malabsoprtion syndromes--

--most prominently celiac disease?

Many of the symptoms you describe could be from lack of essential nutrients, but if that's the case some thing is likely underlying the inability to absorb or take those in.
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Old 09-03-2013, 08:15 PM #23
KAKNJOE KAKNJOE is offline
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Quote:
Originally Posted by glenntaj View Post
--most prominently celiac disease?

Many of the symptoms you describe could be from lack of essential nutrients, but if that's the case some thing is likely underlying the inability to absorb or take those in.
Will this neuropathy go away? I made an appointment with a hematologist today to see if the MTHFR mutation is maybe the problem? I will love to feel good again.
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Old 09-04-2013, 06:07 AM #24
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Lightbulb

Longstanding PN may take a while to heal once the
cause is removed or fixed. If you have hereditary type
That is not reversible (CMT).the longer the PN the longer
The recovery may be. Everyone is different.

Healing depends on diet, lifestyle, avoidance of some drugs
And the body in general.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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Old 09-04-2013, 08:24 AM #25
KAKNJOE KAKNJOE is offline
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Quote:
Originally Posted by mrsD View Post
Longstanding PN may take a while to heal once the
cause is removed or fixed. If you have hereditary type
That is not reversible (CMT).the longer the PN the longer
The recovery may be. Everyone is different.

Healing depends on diet, lifestyle, avoidance of some drugs
And the body in general.
Thank you Mrs. D for your knowledge. I feel like I'm a tossed salad these days with everything I've been taking. If I think it's going to help, I'll take it.

I read your other posts and I am so grateful for your wisdom. I'll also read your sticky notes. Is the MTHFR the cause of me not getting the b-12 in my system? The MTHFR C677T polymorphism (C/T). My results also say "has a normal or wild-type genotype for MTHFR A1298C".

Should I forget the shots and just do the Vit B12 sublingually on an empty stomach like you said. Does that sound better for treatment? Should I take a vitamin b complex with it? And what about the methyl-folate? Today will be my fourth day taking, it if I do?

One more thing, what should i do when my anxiety is through the roof? Can I take a Klonopin? I could bear with the anxiety if I thought the deficiency problem was going to go away and I would see significant improvement.

thanks. Kathleen
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Old 09-05-2013, 06:14 AM #26
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Lightbulb

Quote:
Originally Posted by KAKNJOE View Post
Thank you Mrs. D for your knowledge. I feel like I'm a tossed salad these days with everything I've been taking. If I think it's going to help, I'll take it.

I read your other posts and I am so grateful for your wisdom. I'll also read your sticky notes. Is the MTHFR the cause of me not getting the b-12 in my system? The MTHFR C677T polymorphism (C/T). My results also say "has a normal or wild-type genotype for MTHFR A1298C".

Should I forget the shots and just do the Vit B12 sublingually on an empty stomach like you said. Does that sound better for treatment? Should I take a vitamin b complex with it? And what about the methyl-folate? Today will be my fourth day taking, it if I do?

One more thing, what should i do when my anxiety is through the roof? Can I take a Klonopin? I could bear with the anxiety if I thought the deficiency problem was going to go away and I would see significant improvement.

thanks. Kathleen
Long term use of Benzos like Klonopin may cause more PN problems than you think. When that drug wears off, there can be a rush of PN symptoms. This is because the Benzos are mild antiseizure drugs, and suppress pain signals. So those signals will bloom when the drug wears off.

There is a supplement called PharmaGaba made by PharmaGold (I bought mine on Amazon), which is affordable and works nicely but mildly on anxiety. I found for me it doesn't have to be used every day either once your take some for a week or so. I only use one when I need it. This type is better absorbed than other Gaba products. You might look into it.

http://www.nutrigoldinc.com/GABA

It is hard to say about the effects of your specific mutation.
But I do know that the higher your blood levels the more B12 will cross the blood brain barrier and get into the brain. Methyl B12 is used as a cofactor to make melatonin (the sleep hormone) from serotonin there. People with Fibro and MS have been tested and found to have very low B12 levels in the spinal fluid.

Neurological symptoms precede anemia in many people low in B12. It can take a while (several months) to fix damage. If the damage is longstanding, some may be permanent. You will want to take methylfolate too, and when you do-- try to avoid folic acid. Some new papers suggest a competition with both for crossing the blood brain barrier, and mention has been made to avoid folic acid to get the methylfolate to work better.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

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Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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