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MS mum's?

Posted: Tue Oct 06, 2009 9:11 am
by MrsGeorge
Hi

I'm 7.5 weeks pregnant (trying not to get too excited) but my Dr and MS nurse have been talking about the high likelihood of a relapse immediately after the birth. I am trying to get re-housed into single story whoch would make life easier as this house is not at all wheelchair friendly (rough relapse lately).

Just wondered whether any mum could share their experience or offer advice or suggestions?

Thanks

Posted: Tue Oct 06, 2009 1:26 pm
by Wonderfulworld
Congratulations Mrs. George :D I know the early days are nervous but I have fingers crossed for you. I hope you continue to recover from the rough relapse.

You probably know my experience already, but just in case I haven't already told you, my son is now 19 months old. I breastfed him for 2 weeks but my GP then advised me to give it up and go back on Copaxone immediately :cry: . I did that but 5 months later I had a bad relapse (needed bedrest for 3 wks from fatigue, increase in unilateral nerve pain, spasms on right side, etc). I recovered slowly but fully but have taken a low dose of amitriptyline since because of the nerve pain that set in.

Subsequently - about 7 months after the birth, I discovered that I had insufficient levels of Vitamin D3 despite years of supplementing, and using a prenatal vitamin with an appropraite D3 dosage. I have supplemented and retested since then and I am now over 150 nmol of D3. My MS this year has not been as troublesome as the year after my son's birth.

If I were to "go again" I would definitely get my Vitamin D3 tested about a month after giving birth and get my levels to an optimum range, given all the data about D3 and modifying MS relapse rates.

If there were a chance for you to get a single storey house I'd definitely push for it. Despite having only negligable mobility issues at present, I found it extremely tough to get up and down stairs with a new baby - balance, co-ordination, and just plain exhaustion all added up to a lot of stress and I nearly had my husband convinced we should move. If I had any mobility issues at all I'd press for a rehome if possible.
BEST OF LUCK Mrs.
:wink:

Posted: Tue Oct 06, 2009 4:19 pm
by jimmylegs
congrats again, mrs!

the active metabolite of vit d3 skyrockets in the final trimester, then normalizes post-partum. perhaps that high level of anti inflammatory d3 is part of the protective effect of pregnancy.

if you keep your d3 level up around 150 nmol/L you may be able to maintain better anti inflammatory status even after the baby is delivered.

i have found that zinc helps me absorb vitamin d3 three times more effectively than before i got it up to an optimal level.

d3 is really important for you and your baby, as ww has found. mrs did you get into the habit of taking vitamin d3 too?

if you keep the zinc up, and the d3, and the folic like we mentioned on that other topic, and what the heck a good prenatal multi too, i suspect you will have a better chance of avoiding post partum relapse!

Posted: Tue Oct 06, 2009 4:34 pm
by lyndacarol
Congratulations, Mrs. George! I wish you all the best with this pregnancy!

MS symptoms do improve during pregnancy, especially during the third trimester. You are also correct about MS exacerbations commonly occurring after the delivery, especially in the three-month period immediately afterward.

As you know, my explanation for this stems from my belief that excess insulin is fundamental to MS. I think the growing fetus uses the mother's excess insulin to develop and especially to put on weight in the third trimester. After delivery, there is no longer any fetus to use the insulin; there is an excess again to cause difficulties.

I think the insulin is used during the time of breast-feeding (i.e., storing calories as fat in the breasts for milk production); therefore, I think it would be helpful to breast-feed as long as possible. There are many considerations in the decision -- lifestyle, health, husband's attitude, not to mention the baby! (I have never regretted nursing my infant son as long as possible. I was only able to have one child; the infancy period passes so very quickly -- every moment must be enjoyed.)

I do think it is a good idea to have the vitamin D3 level tested -- with our modern lifestyle, less time outside in the sunshine, more time indoors, sunscreen, etc.

Posted: Tue Oct 06, 2009 4:51 pm
by jimmylegs
there are interesting interactions btw zinc and insulin which might tie in nicely with a bit of searching. have a bad headache at the moment though, not quite as into it as usual!

Posted: Tue Oct 06, 2009 11:57 pm
by MrsGeorge
Thanks ladies.

Jimmy - I was taking zinc & d3 but I stopped taking everything I was on when I got pregnant - at my Drs advice. I now take a prenatal vitamin & the prescribed folic acid only. Do you recommend I continue with vits? I know you're not a doc but I could ask my midwife for her opinion when I see her next week.

I do plan to breast feed as long as I am able. Can you feed on copaxone?

Other than that I am not sure I am getting the most balanced diet at the moment but I am doing the best I can! I seem to just crave stodgy carbs and not much else. Am off chocolate etc but eating toast at a ridiculous rate! Not much fruit and veg so really ought to try and rectify that.

Scan in 6 days then I get to see my little ones heartbeat and find out whether my mother's suspicions of twins is correct!

Posted: Wed Oct 07, 2009 8:09 am
by JenniferF
MrsGeorge wrote:Thanks ladies.

Jimmy - I was taking zinc & d3 but I stopped taking everything I was on when I got pregnant - at my Drs advice. I now take a prenatal vitamin & the prescribed folic acid only. Do you recommend I continue with vits? I know you're not a doc but I could ask my midwife for her opinion when I see her next week.

I do plan to breast feed as long as I am able. Can you feed on copaxone?

Other than that I am not sure I am getting the most balanced diet at the moment but I am doing the best I can! I seem to just crave stodgy carbs and not much else. Am off chocolate etc but eating toast at a ridiculous rate! Not much fruit and veg so really ought to try and rectify that.

Scan in 6 days then I get to see my little ones heartbeat and find out whether my mother's suspicions of twins is correct!
Do a search -- there was a thread on MS & breastfeeding around here recently (in the past year or so). With a link to Thomas Hale's info on drug safety. And also I think a study showing breastfeeding was protective against relapses.

Jen.

Posted: Wed Oct 07, 2009 10:36 am
by Wonderfulworld
Mrs G
I was told I could not bf my son if I was on Copaxone, both by my GP and the Copaxone nurse. :(

I'd go with what your body is telling you it wants at the moment. If that's tons of toast & a bar of chocolate, and no fruit then eat the toast & choc and don't feel guilty. I did not want any fruit or veg until about 16 weeks into the pregnancy. Then I went through a phase of eating lots of it. I think your body and the baby tells you what it needs at each stage. Incidentally my son absolutely loves fish, fruit, veg and all things healthy, as well as the more unhealthy stuff too.

I will be thinking of you as you head to the scan. :)

Posted: Thu Oct 08, 2009 2:00 am
by jimmylegs
mrs g did u post the make-up of your pre-natal vit before, or was that someone else? i am frankly suspicious of the benefit of pre-natal vits made for healthy controls, in ms patients.
personally, and literally, if i were you, i would get bloodwork on the d3 and zinc and anything else known to be low in ms patients, before making a final decision.
target optimal nutrient values for certain things can be drawn from the research - depending how much is available - which family docs are not acquainted with. they just tell you 'normal' when yes you're normal but clearly in a range that is associated with illness.
my own family doc can't answer the kind of questions i ask about ms. the doc has told me straight up that i know more about ms. maybe your midwife can help, but i'd be more inclined to ask a nutritionist specializing in pregnancy and ms... (one that likes using bloodwork!) although my experience with a nutritionist was that they also could not answer my questions :S i have ended up answering them myself by looking at the research!

Posted: Thu Oct 08, 2009 3:59 am
by whyRwehere
I don't have MS, but did breastfeed for as long as possible...and that was really long! I have other issues that were completely dormant for 2 years, due to breastfeeding, so I would rather do that than go back on the copaxone if I were you, but that's me, I just think the breast feeding protects as much as the pregnancy. And I was so glad that I was still going while my daughter had the chicken pox...made it so much easier.

Posted: Thu Oct 08, 2009 7:13 am
by JenniferF
Wonderfulworld wrote:Mrs G
I was told I could not bf my son if I was on Copaxone, both by my GP and the Copaxone nurse.
See:

http://neonatal.ttuhsc.edu/discus/messages/53/1448.html

And for a slightly more fleshed out explanation:

http://msgirl.org/2008/12/26/breastfeed ... -copaxone/

****

There are not studies done on the safety of this drug for breastfeeding. Therefore a medical professional who wants to err on the side of caution, might decide that 'not breastfeeding' is the way to err. (Of course, that has its own risks.)

What Thomas Hale does is look at first of all: Can the drug get into the milk? If the answer is no, you're good. If it can get in, then the questions become, "how much gets in" and "will it harm the baby"?

It looks like Copaxone is probably okay because it is highly unlikely to get into the breastmilk.

***

Here is the entry page for the Medication & Mother's Milk forum:

http://neonatal.ttuhsc.edu/lact/medicat ... spage.html

You should not post there. But if you sneak in on the 'medical professionals' side, there is search function that should pop up in the sidebar. You can use it to search for the drugs of your choice, since the MS drugs seem to be lumped into the "other" folder, which is quite long and hard to skim there.

But don't post, because that would be naughty (and I will have to spank you.). Get your midwife or doctor to post if you have a question that isn't answered already.

Jen.

Posted: Sat Oct 10, 2009 11:47 am
by Wonderfulworld
i am frankly suspicious of the benefit of pre-natal vits made for healthy controls, in ms patients.
I dunno JL I think prenatal vits are at a level that are low enough not to cause harm during pregnancy, but provide some kind of nutritional "safety net" for levels falling too low in any vitamin. I know MS patients may have very specific needs but I feel pregnancy overrides MS for the term of the pregnancy iykwim?

You're right that they will not rectify any serious deficiencies but I'm guessing that most obstetricians wouldn't advocate addressings those deficiencies argressively during pregnancy anyway - I suspect.

For me I found the prenatals gave me some level of assurance I was taking the pregnancy RDA's anyway.

Posted: Sat Oct 10, 2009 3:42 pm
by jimmylegs
welll ww... i'm inclined to disagree, rather strongly in fact. pregnancy is a big drain on nutrients and if an expecting mom is deficient to start with, that can only be harmful to foetal development, not to mention mom, especially with certain of the nutrients.
certainly you would not want to take supplements that could push levels too high, so you'd need blood work to monitor things.
maybe an obstetrician will happen on this and chime in. but if they were a type satisfied with 'normal range' results then there wouldn't even be a point.

Posted: Sat Oct 10, 2009 5:48 pm
by catfreak
Congrats Mrs G!!

Cat

Posted: Mon Oct 12, 2009 1:58 am
by MrsGeorge
well I am seeing the midwife on thursday and know I will be put straight onto consultant care because of the MS and my weight. It's something I can talk to the consultant about. I will ask for advice on what questions to ask him/her when I have a date.