NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Pregnancy with PN (https://www.neurotalk.org/peripheral-neuropathy/211990-pregnancy-pn.html)

sara1011 11-10-2014 09:48 AM

Pregnancy with PN
 
Hello. I've been dealing with neuropathy for the past 9 months. I'm only 30 and hoping to expand my family. My NCS revealed a slow nerve response which confirmed neuropathy, potentially demylenating. After many blood tests that all came back within normal range, they are calling it idiopathic. Very frustrating!! I'm very healthy otherwise with no history of health problems.

My symptoms are consistent but not too painful but being so young I worry about the progression. My doctors have said they don't foresee any issues in getting pregnant but I am wondering if anyone has personal stories to support that.

Thanks in advance!!

Marlene 11-11-2014 08:31 AM

There are normal ranges and then ranges that are right for you when you felt better. An example would be B12 levels. Having a low normal B12 is a red flag to us here. And at 30, yours should be above 500. You may want to post what tests and results you've had, your lifestyle, your diet, etc. That may help others provide you with more meaningful feedback.

mrsD 11-11-2014 09:54 AM

Pregnancy requires lots of essential fatty acids.

Since fish can be contaminated and limited for pregnant women, flax oil remains a good substitute. Women convert this to long chains well, for the fetus to develop the nervous system.

Some prenatals now have DHA in them as well. You can buy algae grown EFAs now too, to boost your levels and help your baby. There is an OTC form called Expecta.

http://www.amazon.com/s/?ie=UTF8&key...l_5lmf5pkuob_b

Boosting EFAs now will help PN too. Marlene's advice about B12 is good as well. Many babies are born to mothers low in B12 and suffer as a result.

Make sure you have adequate folate. Good food sources, and vitamins.

People with the MTHFR mutation, need the methylated forms of B12 and folate. Most commercial products contain, synthetic forms and if you are are one of the MTHFR errors, you will not be making much progress yourself or for your baby.

DNA tests for this are on the net and doctors should be doing it IMO today, with what we know about this serious flaw in some people's genetics. It can be easily and inexpensively fixed if present. Both products are OTC today. (back a few years, this was not available, but now there is no excuse to fix it if present).

sara1011 11-11-2014 10:05 AM

Quote:

Originally Posted by Marlene (Post 1107276)
There are normal ranges and then ranges that are right for you when you felt better. An example would be B12 levels. Having a low normal B12 is a red flag to us here. And at 30, yours should be above 500. You may want to post what tests and results you've had, your lifestyle, your diet, etc. That may help others provide you with more meaningful feedback.

Thanks so much for taking the time to respond. My B12 was taken a few weeks after I started a B Complex and was at 400 which I've also read is low, especially with supplementation. interestingly enough, months later my B6 was taken and was high (44) which apparently can also cause/contribute to neuropathy. Since then I've taken out the B complex (due to the high B6) and am now taking a B12 raw supplement and my level as of last week was at 1100, quite the jump! I had two pregnancies within two years and breastfed and in addition, was taking acid reducing pills which I believe could all contribute to a deficiency. Any insight on recovery time from B12 once your levels start to rise?

Thanks again

sara1011 11-11-2014 10:12 AM

Quote:

Originally Posted by mrsD (Post 1107285)
Pregnancy requires lots of essential fatty acids.

Since fish can be contaminated and limited for pregnant women, flax oil remains a good substitute. Women convert this to long chains well, for the fetus to develop the nervous system.

Some prenatals now have DHA in them as well. You can buy algae grown EFAs now too, to boost your levels and help your baby. There is an OTC form called Expecta.


Boosting EFAs now will help PN too. Marlene's advice about B12 is good as well. Many babies are born to mothers low in B12 and suffer as a result.

Make sure you have adequate folate. Good food sources, and vitamins.

People with the MTHFR mutation, need the methylated forms of B12 and folate. Most commercial products contain, synthetic forms and if you are are one of the MTHFR errors, you will not be making much progress yourself or for your baby.

DNA tests for this are on the net and doctors should be doing it IMO today, with what we know about this serious flaw in some people's genetics. It can be easily and inexpensively fixed if present. Both products are OTC today. (back a few years, this was not available, but now there is no excuse to fix it if present).

Thank you for your insight, I'll def. take note. In addition to adding a hearty Omega 3 supplement to my regiment, I've been increasing my intake of flax, hemp and chia seeds as well as antioxidants. I also appear to have some pressure palsys which is why pregnancy concerns me.

I plan on further discussing the possible genetic component as well. My doctor didn't seem concerned as he didn't believe based on family history and my physical that I had any markers for it.

mrsD 11-11-2014 10:23 AM

Well, I think your "pressure palsies" suggest low methylation.

You can just ask for the test. Or get it yourself from 23andme.
It is not that expensive. But it is very costly to you and your future baby if you cannot provide the nutrients in their proper form for the baby's nervous system, and also perhaps make your own neurological symptoms worse as the baby drains off the EFAs from you. MethylB12 and methylfolate are important for forming the myelin sheath of the nerves. (along with the EFAs.)

Marlene 11-11-2014 10:40 AM

If you were on birth controls pills, these can deplete folate also. You may want to search out a good holistic nutritionist prior to getting pregnant.

mrsD 11-11-2014 10:51 AM

There is really no correlation between "high" blood levels of B6 in testing IMO. The ranges were deliberately taken originally from people NOT USING any supplements.

We have no, therefore, frame of reference for what transpires in people scoring slightly out of range with B6 testing.

One would expect a high reading if you are taking vitamins.

For B12 testing one should stop them about a week (at least 3 days to a week) before the expected test. Acid reducing drugs affect and lower B12, folate, calcium, magnesium, zinc and iron absorption.
All critical for pregnancy.

Marlene 11-11-2014 12:35 PM

Also, on the B6, we use the P-5-P form. It's a more bio-available form and from what I understand, doesn't contribute to B6 toxicity experienced by some when taking the pyridoxine from. And unless you were taking high doses (100 MG)of it, it probably wasn't high. Like MrsD said, you need to stop supplements prior to testing for them.

Recovery varies from person to person. My personal belief is that your body will decide in what order it will heal. Sometimes, or probably many times, it's never in the order you want. I would suggest taking the next six months to a year to get your body built back up before you get pregnant.

Also explore why you need/needed acid reducing medicine. You may need to look at thing contributing to that imbalance...like gluten or wheat issues, food sensitivities, imbalance in the gut bacteria.

sara1011 11-11-2014 01:09 PM

Am I correct that you are referring to the MMA Panel? If so, I was recently tested for that but with supplementation by value was at 54. If there is another test/panel that you're referring to, can you confirm? Sorry, I'm new at all this! So appreciative of your help.

Quote:

Originally Posted by mrsD (Post 1107291)
Well, I think your "pressure palsies" suggest low methylation.

You can just ask for the test. Or get it yourself from 23andme.
It is not that expensive. But it is very costly to you and your future baby if you cannot provide the nutrients in their proper form for the baby's nervous system, and also perhaps make your own neurological symptoms worse as the baby drains off the EFAs from you. MethylB12 and methylfolate are important for forming the myelin sheath of the nerves. (along with the EFAs.)


sara1011 11-11-2014 01:11 PM

Good to know about the removal of the supplements prior to testing. Should have thought of that!!

Quote:

Originally Posted by mrsD (Post 1107300)
There is really no correlation between "high" blood levels of B6 in testing IMO. The ranges were deliberately taken originally from people NOT USING any supplements.

We have no, therefore, frame of reference for what transpires in people scoring slightly out of range with B6 testing.

One would expect a high reading if you are taking vitamins.

For B12 testing one should stop them about a week (at least 3 days to a week) before the expected test. Acid reducing drugs affect and lower B12, folate, calcium, magnesium, zinc and iron absorption.
All critical for pregnancy.


sara1011 11-14-2014 01:43 PM

If I was/am in fact B12 deficient, can you tell me your thoughts on this supplement: Garden of Life Vitamin Code Raw B-12

Quote:

Originally Posted by mrsD (Post 1107291)
Well, I think your "pressure palsies" suggest low methylation.

You can just ask for the test. Or get it yourself from 23andme.
It is not that expensive. But it is very costly to you and your future baby if you cannot provide the nutrients in their proper form for the baby's nervous system, and also perhaps make your own neurological symptoms worse as the baby drains off the EFAs from you. MethylB12 and methylfolate are important for forming the myelin sheath of the nerves. (along with the EFAs.)


mrsD 11-14-2014 02:12 PM

I am not impressed. This product does NOT disclose exactly what B12 is included. Is it cyano or methyl? For this reason alone, you should avoid it IMO.

It is also expensive for what you get. 30/11 dollars.

What is "raw B12" ? B12 is not found in plants or fruit.
This is a highly misleading product designed to pull in people who are vegan.

It is only from animal sources.

This is a sampling of methyl B12 from various companies sold on Amazon.
http://www.amazon.com/s/ref=nb_sb_ss...in%2Chpc%2C110

We buy ours at Costco directly and it is works out to 6.7 cents a tablet (at a cost of 20.00-- it is less $$ for members at Costco and they run sales there too.) In the past I used Jarrow's first as it was one of the only on the market, then I moved to Puritan's pride, but then Costco came out with it so much more affordably. So that is what my husband and I take now.

You need to choose a stand ALONE B12... nothing else mixed in with it. It should be taken on an empty stomach, with a little water. Other foods/fibers present may block its absorption in the small intestine. This is how it needs to be taken for best results. This should not be a pricey or expensive thing to do.

If you do know you do not have the MTHFR mutation for sure you could use this product. But I cannot guarantee good absorption for you with it, so you will have to get tested to see if it is working. The best test "for working" is the MMA.

Other non activated B12's will float around in the blood and show up in tests perhaps, so they are less clear in MTHFR patients so the MMA test would be better.

A good methyl B12 is therefore pennies a day. There is nothing else like this to supplement for the health of your nervous system and body, for such little investment, over the counter!

jenng 11-14-2014 04:43 PM

? for MrsD....& advice for Sara
 
I take my methyl B12 & methylfolate with my synthroid first thing in the a.m. on an empty stomach. I couldn't find anything to suggest not to take them together, but wanted to check with you. :)

To the OP Sara, a genetic testing company called 23&me (and there are others) will provide your DNA information in raw form. It recently was just $99 for a swab kit and analysis. You can use this for ancestry information, & you can plug your raw data into sites like Genetic Genie to see if you have any gene mutations involving the methylation pathways. This can be very important information for us idiopathic PN'ers. I had abnormally low B12 a few years back (in the low 200's, which was odd, since I was not vegetarian. ) I supplemented with the cyano-form before I knew about methylation mutations, and only got it to 600. My genetic testing showed several heterozygous mutations in various pathways. I will re-test next month to see what 2 months of bioavailabile B12 & folate will show.

I have 2 girls and my neuropathy was identified in its earliest stages by emg the year after my youngest was born. (at 33.) Of course back then I knew none of this! I had no known family history of neuropathy! Now am 45 and the progression has been steady. If you can, I would get the genetic testing and build your body stores up. Proper preparation should be easier than trying to reclaim what is lost.


All times are GMT -5. The time now is 12:39 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.