Diagnosed in Oct., and wanting to try to have a baby soonish

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Diagnosed in Oct., and wanting to try to have a baby soonish

Postby AudRiddle » Fri Jan 27, 2017 8:48 am

I am 31 and was diagnosised in Oct of 2016. According to my scans with several lesions (only one showing damage) I have had MS for while. I am on Copaxone and have been on a clean eating diet to aid in keeping inflammation out of my body. I am self employed, so I have taken steps to keep stress out of my life as well. I feel good. My only flare was left field vision loss in Sept. which does come back with heat. I have had some fatigue but since changing my diet I do not have fatigue problems at all. Other than that i don't have pain or other symptoms. I do yoga and workout with no problems and kick my husbands butt. I really feel great. My 3 month follow up with my doctor was Jan. 4th and I am kicking myself because I did not specifically ask if my husband and I could start trying to conceive. We discussed that getting pregnant on copaxone is fine and that it is a category B medicine (meaning it's been tested on animals), we discussed that women with MS tend to fare better in the long run with having kids (no reason just what research has shown). But I did not ask if getting pregnant before my 6 month MRI was okay. I called the nurse, and she said we should wait to see how stable the disease is. It's only a few months but I am just wondering why. I feel good, I have a great support system. I'm just looking for advice from other experienced women. The major thing I've learned is doctors don't know why MS is and does what it does, and that first hand experience is more valuable sometimes. We were about to start the possibilty of trying to have a baby when my flare up happened so it is just a big inturruption and I don't want this disease to ruin my dream of becoming a mom.I appreciate any one's insight or advice or anything really! :?
Last edited by AudRiddle on Fri Jan 27, 2017 5:51 pm, edited 2 times in total.
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Re: Diagnosised in Oct., and wanting to have a baby

Postby lyndacarol » Fri Jan 27, 2017 10:32 am

AudRiddle wrote:I am 31 and was diagnosised in Oct of 2016....
I don't want this disease to ruin my dream of becoming a mom.I appreciate any one's insight or advice or anything really! :?
I understand your concern with having the MS diagnosis, treating it with Copaxone, and wanting to have a baby. The nutrient levels in your body are critical to your entire situation. I suggest that you consider seeing your GP or OB/GYN and test for nutrient levels in preparation for a possible pregnancy, – optimal levels are necessary for a successful pregnancy and the development of a healthy baby.

In my opinion, the first test to request is the vitamin D blood test called "25-hydroxy D."

From the latest GrassrootsHealth newsletter:

Effects of vitamin D deficiency during pregnancy

Low vitamin D levels during pregnancy are associated with increased risk of preterm birth and low birth weight and factors linked to gestational diabetes, preeclampsia, and bacterial vaginosis.

A study by Zhang et al. concluded that pregnant women with lower vitamin D levels had a greater risk of gestational diabetes, even to the point of every drop of 5 ng/ml was related to an increase of 30% in gestational diabetes risk.

A study by Bodnar et al. showed as vitamin D levels increase from low to high, the risk of preeclampsia decreases. Since the time of this webinar a new study by Mirzakhani et al. found that women who had vitamin D levels above 40 ng/ml at conception had virtually no preeclampsia.

An ongoing field trial at the Medical University of South Carolina has been running for over a year. More than 3000 women in this predominantly black community had their vitamin D levels tested at their first prenatal visit and were given supplements and information on the importance of having a vitamin D level of at least 40 ng/ml. Pregnancy outcomes including gestational diabetes, preeclampsia and preterm birth have been measured and preliminary results will be reported in the coming months.


Maternal vitamin D status and adverse pregnancy outcomes: a systematic review and meta-analysis
https://www.ncbi.nlm.nih.gov/pubmed/23311886

CONCLUSION:
Low maternal vitamin D levels in pregnancy may be associated with an increased risk of preeclampsia, GDM [gestational diabetes mellitus], preterm birth and SGA [small -for-gestational age].


Researchers Recommend Pregnant Women Take 4000 IU Vitamin D a Day
http://www.grassrootshealth.net/press/92-press-20100430


Disease Incidence Prevention – Pregnancy by Serum 25(OH)D Level
http://ww1.prweb.com/prfiles/2016/06/17 ... no-ref.pdf
Last edited by lyndacarol on Fri Jan 27, 2017 11:16 am, edited 1 time in total.
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Re: Diagnosised in Oct., and wanting to have a baby

Postby jimmylegs » Fri Jan 27, 2017 10:44 am

apologies i have no direct xp with pregnancy during ms :(

obviously though, in terms of essential macro and micronutrients there is far more to bringing a healthy child to term than vitamin D. that said, it is true that some of the protection associated with pregnancy during ms may be relate to third trimester changes in active steroid hormone forms of vit d.
reaching back to 2007 for this!! i was only looking for the 1,25 stuff and had forgotten entirely about the magnesium connection: general-discussion-f1/topic3714.html#p24890
then i decided to search on thyroid nodules and cholecalciferol and came up with this link:
http://www.ncbi.nlm.nih.gov/books/bv.fc ... tion.43218
it's more of a cancer article but with the autoimmune linkages, sure okay i'd give it a once-over, and when you search the page for cholecalciferol, it goes to this sentence:
Hypomagnesemia also inhibits formation of 1,25-dihydroxy vitamin D3 (1,25-dihydroxycholecalciferol).
now this i find extremely interesting because we know 1,25-dihydroxy vitamin D3 provides brakes for the immune system similar to what the interferon drugs try to imitate. we also know that the third trimester of pregnancy is protective against ms and that serum levels of 1,25-dihydroxy vitamin D3 more than doubles during that final trimester. so if magnesium is a limiting factor for 1,25 production, well then we'd all be smart to make sure we have not just calcium to go with our D3 supplement, but magnesium also. which we knew already but this adds another layer of rationale for me, so neat.
looks like this letter has the links to relevant studies.
Hypothesis: Calcitriol Mediates Pregnancy's Protective Effect on Multiple Sclerosis (1993)
http://jamanetwork.com/journals/jamaneu ... act/592315

i would love to see a study that tracked how at least say 5 nutrients relevant to ms patients change during the course of pregnancy, in ms patients and health controls, given the use of prenatal vitamins. there are already studies to show that prenatal vits don't necessarily stop zinc from declining over the course of a pregnancy, and we've seen that manifested here when user cristin got rid of worrisome ms-like symptoms by 1. figuring out she was doing her prenatals incorrectly and then 2. adding extra zinc above and beyond what the prenatal product had been providing.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Diagnosised in Oct., and wanting to have a baby

Postby AudRiddle » Fri Jan 27, 2017 12:12 pm

Good info guys thank you! I do take viatmin d3 2000 ius twice a day, calcium and magnesium twice a day, CoQ10 200 mg, Omega 3 fish oil 1000 mg twice a day, folic acid, womens one a day, and a probitoic. I try to eat spinach and berries and nuts everyday. I sort of follow the paleo or clean eating lifestyle to try and get more vaitmins and minerals through eating. I have an ob gyn appt for March so I will ask for my levels to be tested!

Really appreciate your alls responses. It is nice to be able to talk though things!
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Re: Diagnosed in Oct., and wanting to have a baby

Postby jimmylegs » Fri Jan 27, 2017 5:33 pm

no prob! great plan to get as much daily nutrient intake as you can via healthy nutrient dense diet choices, and minimized intake of antinutrient foods or participation in antinutrient activities.
can i ask what dose and form of magnesium you are using and how you time it in relation to your daily d3?
also how much zinc in your one a day, and which are your main dietary zinc sources?
did you get a b12 result as part of your dx process?
questions questions questions :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Diagnosed in Oct., and wanting to have a baby

Postby AudRiddle » Fri Jan 27, 2017 5:50 pm

Good questions. Should I take magnesium at other times? Right now I am taking all my vitamins together. I've only done a little bit of research on splitting them up but it seemed really difficult to actually take them that way. It's a calcium and magnesium in one at 1000 mg and I also add calm to my tea in the evenings 2 teaspoons 300 mg (when my dad was diagnosed with a kidney disorder a few years ago we learned that magnesium is best absorbed in powder form).
I do take a b complex I forgot to mention.
There are only 15 mg of zinc in the one a day. I do eat raw cashews, pumpkin seeds, greek yogurt, beef and spinach fairly regularly.
I have not had any of my levels checked, vitamin d, b12 or any other blood work.
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby jimmylegs » Fri Jan 27, 2017 7:12 pm

hi yep it's wise to take some of your daily mag with the d3 and some away, so that your body can use some mag for the other 300+ things it has going on besides dealing with d3.
so the bedtime calm probably takes care of that split somewhat, even though citrate's not the most soluble/absorbable form out there. (i'm a glycinate fan)
i am also a fan of powder (or gel) caps for pretty much all things supplemental. good stuff.
good news re b-complex. i'm surprised your docs didn't run a b12 level as part of your ddx though, if only to decisively rule out dietary deficit or pernicious anemia. are you *sure* there's not a b12 level kicking around in a file somewhere?
15mg zinc in a one a day should be okay, but absorption would likely be affected a bit if calcium intake is too high, same with excessive phytates or gluten, or supplemental iron, all that kind of thing. if your copper intake is high, that can be rough on a healthy copper zinc ratio as well.
you probably already know that veg sources of zinc are less bioavailable than animal sources. where veg zinc is concerned, i've recently read that you need to eat 30% more than the given serving size, to actually absorb the zinc that's indicated per serving.
if you can break up when you take the one a day with zinc and that cal mag, you might get better zinc retention overall. i personally take a balanced 50mg zinc 2mg copper powder cap. the daily upper limit for zinc is 40mg/d right now, so i generally just take it every other day. i am also working on liking oysters, specifically for the zinc density. it is a work in progress :P
if you get an opportunity and are feeling so inclined, a handful of ms-relevant nutrient blood tests could be useful. serum b12, d3, magnesium, zinc, and uric acid come to mind. on a non-ms note, i had a supervisor who was having issues getting pregnant and i told her to work on zinc for fertility and the next thing i heard from her about it, she was pregnant and it had happened 6 weeks after she started working on zinc after trying and failing to get pregnant for the previous year and a half. was pretty awesome :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby AudRiddle » Fri Jan 27, 2017 7:25 pm

I haven't had blood work at all so no levels have been taken. My doc did mention doing it some day but he didn't seem to think it needed to be done right away. I am 112 5'3" and he kind of said I must be doing some things right so we can test eventually but wanted me taking d3 (up to 10000 ius/day.
I will definitely ask for these tests. I am still learning about how to maximum my health! I like learning though. I have always been a little bit health nut, so I enjoy all this stuff!
I am crossing my fingers we won't have trouble once we start trying to conceive, but it seems like everyone I know has had trouble. The zinc thing is good to know!
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby AudRiddle » Fri Jan 27, 2017 7:30 pm

Ps apparently my scans were very cute and dry ms. They said you could look at the scans from across the room and know. I have several lesions but only the one that showed as a debilitating flare. Looking back I've had some symptoms since I was little.
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby jimmylegs » Fri Jan 27, 2017 7:34 pm

wow that freaks me out. can you describe your dx process? which tests were done altogether? are you saying they did it on scans alone? brain and spine i take it?
personally i would never *never* throw anyone on long term high dose d3 without knowing minerals were optimized. a great pharmacist saved me a long time back now, i had scary issues and he knew instantly that my mag and d3 were out of balance. he was the first person who told me to split up my mag intake around the d3. not like i chat up pharmacists all the time, but i haven't run into any like that since. dude really knew his stuff. (i was only in the pharmacy that day at all, bc i'd been in for a chest xray because i couldn't breathe - didn't even ask the pharmacist a question about that issue either.. i was asking about something re cancer for someone else entirely. don't even recall how he ended up on me stuff at all)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby AudRiddle » Sat Jan 28, 2017 3:11 am

I've only had a brain scan. Getting a spine scan in april.
So what happened was my husband and I were buying a house, the people selling made it a very difficult process and because I'm self employed I was dealing with it more than my Husband. There were some other major stressoes but that was the biggest. A couple days before closing, I woke up and couldn't see. It was a week before I made it to an eye doctor who said there was nothing wrong with my eyes but I needed to see a neurologist. Well we have a family friend that's a neurosurgeon, so I was scheduled for an mri the next morning. He thought I had a tumor by my symptoms. By noon the day of the mri I was called with my diagnosis. That afternoon I had my first neurologist appointment. It all happened really fast but everyone said no doubt ms. We went over a few medicines and that while there is no scientific research backing dietary changes it direct hurt but that i don't need to change anything. He did go over the fact that most Americans are deficienct in d3. my mom has always been deficient. Crazy thing is now I'm learning of other deficiency links, polyscystic ovarian syndrome (my sister has), gestaional diabetes (my other sister just had with her pregnancy).
I definitely will get my blood work checked though!
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Re: Diagnosised in Oct., and wanting to have a baby

Postby NHE » Sat Jan 28, 2017 5:50 am

AudRiddle wrote:Good info guys thank you! I do take viatmin d3 2000 ius twice a day, calcium and magnesium twice a day, CoQ10 200 mg, Omega 3 fish oil 1000 mg twice a day, folic acid, womens one a day, and a probitoic. I try to eat spinach and berries and nuts everyday. I sort of follow the paleo or clean eating lifestyle to try and get more vaitmins and minerals through eating. I have an ob gyn appt for March so I will ask for my levels to be tested!

Here are some thoughts to consider. It's best to get calcium from food sources. Calcium supplements have been found to cause hypercalcification in the blood which leads to calcium plating out in your arteries and veins.


Here's a link to good food sources of calcium.

http://whfoods.com/genpage.php?tname=nu ... #foodchart

In addition, folic acid is a synthetic analog. It interferes with the function of natural folates. It's best to take methylfolate.

Here's a video from Dr. Ben Lynch with more information on folate.

https://www.youtube.com/watch?v=cWFPRI6X7P4
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby AudRiddle » Sat Jan 28, 2017 5:59 am

Thank you!
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby jimmylegs » Sat Jan 28, 2017 8:01 am

oh wow that must have been scary. when you say you couldn't see, was it blurry, or kind of didn't make sense, or full on no signal? i knocked my sight right out one time (early on the snowboard learning curve, no helmet) but it only lasted a few seconds. at a completely separate time, i had some trouble processing visual information, but i was able to clear it up. both definitely brain issues, one trauma one nutritional.
(it was actually another crash years later that triggered my whole diagnostic process. crash, no helmet, then ascending bilateral sensory loss, and because i had a major overseas thing departing feb 2, front of the line).
other than that all i can say, and not in regard to losing vision at all, is that stress is a drain on minerals and magnesium in particular. were you on your full mag regimen during the closing?
there's a mountain of research on nutritional approaches for ms but study design flaws = the gap in the science.

Dietary interventions for multiple sclerosis
http://onlinelibrary.wiley.com/doi/10.1 ... .pub2/full
"No studies on vitamin supplementation and allergen-free diets were analysed as none met the eligibility criteria."
"Evidence bearing on the possible benefits and risks of vitamin supplementation and antioxidant supplements in MS is lacking. More research is required to assess the effectiveness of diets interventions in MS."

where i personally find things are off, and i haven't really dug in systematically i've just been in the academic lit for a decade, is when studies trial a dietary approach but don't also look at serum levels of relevant nutrients, to determine if the dietary or supplement components are being absorbed sufficiently to get serum levels out of a low normal range that aligns with illness, and into a higher normal range that aligns with health. it's also rough when studies only look at one thing, when to make real sense of impact you'd do better to look at interacting cofactors. it's coming along though. i have to say however, that i'm not in position to put everything through the methodological fine tooth comb applied in the study above.

we touched earlier on how low magnesium impairs conversion of 25(OH)d3 to 1,25(OH)2vitD3; other studies indicate that we don't even efficiently biosynthesize 25(OH)vitD3 from sunshine, without sufficient magnesium in the picture. in my personal experience (and this is more of a d3 absorption from diet scenario) i started taking d3 early, before i learned much about minerals. after i had gone through a long nutritional learning curve, when i did another big d3 week with a test before and after, the dose response tripled. before i spent years working on nutrition, with a short term regimen of high dose d3, my levels went from mid 70s to 150 nmol/L. after a few years working on nutrition, with an even shorter d3 regimen, levels went from 100 before d3 to 271nmol/L after. so well over three times better absorption. pretty crazy.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Diagnosed in Oct., and wanting to try to have a baby soo

Postby AudRiddle » Sat Jan 28, 2017 8:54 am

So you get better absorbtion through you diet or accompanied by mag? How much mag should be accompanied? I know that calcium has trouble being absorbed without sufficent levels of mag too, right? I eat quite a bit of calcium rich foods (minus cows milk and tofu...).
I'm going to make an apt with my GP to get bloodwork done stat! I'm very curious.

When my vision went, I would tell people I couldn't see and they would say what do you mean and I would say it just doesn't make sense. It wasn't blurry and it wasn't necessarily blotchy but it was really hard to explain and reading was not happening to read a sentence i had to move my head to make up all the letters, very frutrating. It lasted about 6 weeks, my neurologist gave me the option of steriods but I declined because steriods wreck more hvaoc on the body then do good and he said it would only increase my recovery by a week or two. The medical term was homonymous inferior quadrantanopia but I tell people left field vision loss because that is easier. My neurologist has never seen exactly that in an MS diagnosis. And thought it was pretty odd I have never shown physical symptoms that would have caused alarm by my scan. At the time I thought I was a healthy individual. No conditions, no majoy surgeries, nada, so I wasn't taking any supplements either.

I wish there was more research put into dietary approaches with paying attention to the levels like you said but that's not where the $$$$ is at.... sad! In the little bit of research I have done it seems as though much of our normal modernized world problems are linked to our lack of a good diet (well and all the perticides and crap in our food).

One of my friends that also has MS goes to a different neurologist, and she is the research MS neurologist and she believes the diet approach has no relevance and a waste of time. To me that is absolutely shocking and glad she is not my neurologist.
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