This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm newly diagnosed with MS about 4 weeks ago. I'm still experiencing some symptoms (numbness mostly). I had my first appointment at the MS clinic last week. We talked about starting the DMT meds but my husband and I have been planning on expanding our family soon (we have a 16 month old little girl) and so the doctors said it's best to focus on family planning right now before I start the meds because it's very important to us and you can't be on meds if you're trying to get pregnant. And with the DMT's taking so long to take effect and requiring you to be on them for so long, we decided to wait until after we have another child and that is what the doctors recommended as well. It's a tough situation because I want to start meds close to diagnosis because they say that's best, but we have a dream of having more children so now I feel more rushed because I don't want to spend too long without any meds and risking it. Are there any of you who don't take any meds at all? They say that pregnancy sometimes "protects" you a little from relapses so the doctors said "pregnancy will be your medication" and then I can start DMT's after. So I'd really like to know how others experienced pregnancy with MS, if you had any relapses and generally how you felt. I'm just trying to prepare myself the best I can this time. I'd appreciate any responses. Thank you!

I do NOT think that MS is an autoimmune disease. All current MS drug treatment is based on the hypothesis that MS is autoimmune. Therefore, I CHOOSE not to use any MS medication at this time. I have used Betaseron, Avonex, and Copaxone in the past; I don't believe I experienced any positive benefit from these drugs.

Each of us has a different situation, each of us has a unique understanding of MS, and each of us must make his own decisions concerning it.

Being a man, I can't give any advice about how pregnancy affects MS. I think other members here with MS have been pregnant, so maybe they can give you advice.

It does seem that the hormones released during pregnancy do help to reduce relapses. I just read about a new study starting up (for women only) where does of estriol are given. I believe this was also done in the past. You might want to search through old threads here to get more info on the topic of MS and pregnancy.

While it's generally recommended to start a DMD as soon as possible, their efficacy leaves much to be desired. Which is why many choose not to use them. So, if having another child is important to you, it's probably pretty easily justified to wait for the DMD.

hi there, i have never been pregnant before or since dx, but i have seen some discussion on the boards and i know there are a few members here who could provide some first-hand info.

it is the third trimester that is particularly protective. coincidentally, there is a spike in vitamin d3 status in pregnant women during the third trimester. in particular, the steroid hormone 1,25 dihydroxyvitamin d3. (the body's stores of 25 hydroxyvitamind3 - ie capacity to make 1,25 dihydroxyvitamin d3 - are likely to be deficient by this time

the potential for relapse after delivery is another thing to be aware of. pregnancy is particularly draining for several nutrients such as zinc, among others.

there are the usual prenatal vitamins that are given to expecting mothers, and i personally feel those are fine for healthy moms. i think though, that ms moms need more than that.

a few links:
The Risk of Maternal Nutritional Depletion
http://jn.nutrition.org/cgi/content/abs ... 33/5/1732S

Replete vitamin D stores predict reproductive success... (this one's about IVF but still interesting given that d3 is an issue in MS patients also)
http://www.ncbi.nlm.nih.gov/pubmed/19589516

Metabolism of minerals and vitamin D in the pregnant woman and the fetus (abstract in english, full text in french)
http://www.ncbi.nlm.nih.gov/pubmed/6302874

Changes in calcium, 25(OH) vitamin D3 and other biochemical factors during pregnancy
http://www.ncbi.nlm.nih.gov/pubmed/16699295

IL-12, TNF-alpha, and hormonal changes during late pregnancy (this excellent find is courtesy of Shayk)
http://www.ncbi.nlm.nih.gov/pubmed/11600565


there are a couple of other ideas out there too, related to optimizing nutrient absorption. if you are interested in discussing this more, just say.

like LC, i am not on any of the recommended drugs. i never have taken ms drugs (i was only dx'd in feb 06 though).

in case you have not already checked out recommended supplements for ms, check out the links below.

hope this helps,
JL

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hi hlm286
it's a difficult choice isin't it. Welcome to the board by the way. I have a 17-month old son...and diagnosed with MS nearly 11 years ago.

I think that once you start a DMD it can take up to 6 months to reach effect so maybe it would be wiser to get yourself as healthy as you can with good food, nutrition and light exercise and try to conceive quickly - then as you say you can have the DMD treatment lined up for after you give birth.

I experienced pregnancy as being nearly MS-free - a little bit of numbness - I didn't experience any serious MS symptoms. I breastfed my son for 2 weeks (I was really upset about limiting it to just 2 weeks but my GP advised that) and then went straight back on Copaxone from then on.

Despite this I did have a relapse about 6 months after the birth, but it was mainly severe fatigue and an increase in nerve pain. I got over it ok with all the family helping to mind the little man and my husband took extra leave.

One thing I'd suggest is that you check your vitamin D3 levels NOW. I had been taking some extra Vitamin D and a good multivitamin before pregnancy, and a good prenatal supplement, so I assumed I wasn't deficient. I was. I think this may have contributed to my relapse by 6 months after the birth, because my D3 levels had still not got to the normal range by then. If I was "going again" I would make sure my d3 was optimal before trying to conceive.

The very best of luck with your decision.

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

I'd like to thank everyone for your responses. My husband and I are still on the fence about what to do, but it is definitely helpful having your inputs.

Wonderfulworld,

I hope this isn't too personal, but I was just wondering if you had any symptoms start or worsen while you were pregnant with urinary incontinence or constipation? I'm already somewhat experiencing both and so it makes me nervous to get pregnant because I know pregnancy itself can cause these symptoms and I don't kow how I'd handle them if they got worse. I just dont know if pregnancy commonly aggravates MS symptoms already present...

No problem hlm286 - we let it all hang out on thisisms!
I have existing problems too with frequent urination, especially at night, and a strong tendency to constipation too.

To be honest with you, frequent urination became troublesome only in the last trimester. I did find keeping regular difficult but I found that if I ate a bio-yoghurt or two every day, lots of soft fruit, drank plenty of water and tried squatting a bit before moving my bowel, that helped. I also had one strong cup of coffee a day whilst pregnant because that always makes me "go". I know some people don't drink coffee whilst pregnant but my obstetrician said as long as I wasn't having 10 cups he was ok with it. If I got very constipated I drank prune juice.

The frequent urination problem - that gets bad for everyone during pregnancy as far as I can see.

I have other MS-symptoms that lie dormant a lot of the time and those sypmtoms did not appear during pregnancy. So it makes me think that most of what I experienced was just pregnancy symptoms. It wouldn't put me off doing it again.

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

Okay so I called my midwife today just to see if she's had experience with people with MS, what their pregnancy was like, etc, just to better prepare myself. She doesn't really tell me anything that I was looking for but starts going off on me that I should go get genetic testing done before I try and have a baby to see if I could pass it to my children because "I wouldn't want to have kids and then they grow up and get MS and say, ' Thanks, mom!' because I didn't get tested". Otherwise I guess if that happened they'd wish they'd never been born? She just kept repeating that I need to get genetic testing done, and see a MS speacialist to "get my questions answered". (Although I did tell her that it was the MS specialists who told me to focus on family planning.) She even had the nerve to say "maybe you're done having babies". I was balling when I got off the phone because A) I'm already stressed with all that's happened and B) I hate people looking down on me and giving me "advice" when they know nothing about what they're talking about! I mean I admit I'm still learning about MS but from what I've gathered they haven't proven it is hereditary or a cause so I don't think you could get tested for it (please correct me if I'm wrong), and just because you have something wrong with you doesn't mean you should give up on your dreams and your goals, what kind of life would that be? I just hate how some people think like "you have a disease, it could be contagious, you're selfish to want children" because that's how she made me feel. I know I'm just venting mostly but I thought who better to vent to then the people who understand best. Have you ever had people treat you like this or say things? What makes people think they should "advise" others about ailments they know nothing about. My husband gets upset because I get so upset and tells me not to let things other people say effect me and that it was the MS doctors who told me to try and have more children. It's just hard when people are insensitive and uninformed. I guess I'm probably going to meet a lot of people like this now, do you?

Tell your midwife to go to hell!!! I am also recently diagnosed (4 months) and newly married (1 year less 3 weeks). I have had several people raise the baby issue, and I respond with "I have had a wonderful life, and it's not over yet, why would I deny myself a child or deny a child a wonderful life?" There is evidence that MS is linked to a "genetic susceptibility". Chances increase from 0.15% risk to 0.5%. I do plan to monitor my child's vitamin D levels and possibly supplement their intake in hopes that this will impede the onset of MS. As for pregnancy and MS, all the research I've read suggests that MS sufferers fare very well during pregnancy, but often have relapses shortly after. There has been evidence that the pregnancy hormone progesterone is very useful in the treatment of brain injuries, so that might have something to do with why. They don't really do any research into the uses of progesterone as it is not open to patents and thus is not profitable.

All I can say is continue to live, laugh and love. Life doesn't end with MS.

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Where is fancy bred? In the heart or in the head?

hlm, your midwife sounds like she knows more about MS than most. perhaps she can enlighten the TIMS community and your MS doctors as to the specific genetic testing that can predict your likelihood of passing your MS to your future children.

in the unlikely event that she doesn't know what the hell she's talking about, take comfort in the fact that you have loving support around you and a good place here at TIMS to vent.

in time you will be able to let all that superior intelligence roll off your back. give yourself more than a month after dx to get over the fragile stage!

FL, just wanted to add in that i hope you're not focussing on vit d alone - there are quite a few more usual suspects in ms that you may want to consider for yourself, as well as any future children. if you haven't checked them out already, i added some links here:
hth, JL

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Thanks Jimmylegs, that gave me a laugh . and I am grateful for finding this site and support of all of you.

I am currently taking a multivitamin, vit D (although I'm not sure how much to take, I started on 1000 IU but bump it up to 2000 - 4000 depending on how much sunshine I get that day), and I've started taking a Calcium Magnesium pill (again not sure how much to take). I've also bought cod liver oil pills but am nervous taking them because of the high vit A which I think can cause birth defects with too much vit A during pregnancy. I was thinking of switching to Omega 3 capsules but there's so many varieties, I didn't know what to get! (Omega 3, Omega 3,6 &9, Wild Salmon oil). What do you think?

Jiimy legs,

On the Direct-MS link you posted it says this:
"Omega 3 Essential Fatty Acids – 3 grams of EPA +DHA. This is best gotten from fish oil such as salmon oil (.3 grams EPA + DHA per 1 gram capsule)."
But that is why I had trouble finding which pill to take because the bottles didn't say the measurements in grams and the capsules weren't 1gm each and it said percentages of EPA and DHA, not grams.

hey there hlm, glad you got a chuckle.

multi sounds good - go for a natural food sources product if possible. is it a multimineral also?

re cal/mag, try for roughly calcium = 1200mg, magnesium = 600mg per day. get the magnesium in citrate form if you can. it's the least likely to give you the runs. if you find 250mg capsules, start with one a day and then work up to 2. three will probably be a bit much, at least it is for me.

for both calcium and mag, as well as vit e, eat lots of really dark greens like kale. they will also provide vit K which you need when supplementing D3.

i will add a recommendation for zinc 25-50mg which i think is also at one of those links i posted ... sometimes i have to take 100mg to keep it high enough.

as for fish oil, currently i'm taking some by o3mega+ fit. i got them as freebies so i am not sure how much they cost.
they are anchovy, sardine and mackerel only .835 gram pills.
the EPA is 148 mg and the DHA 96 mg.
on the bottle it says to take 2 per day which works out to .5 grams EPA and DHA. there are 60 softgels in the bottle

i have just noticed (bad me!) that it also has borage oil, natural vitamin E and rosemary extract
(FYI therefore this product could be useful in conjunction with a regular multivit - because your multi probably only has alpha-tocopherol for vit e. is it dl-alpha, or d-alpha on the bottle? what dosage?).
guess i should not have been taking an E8 complex too, recently ... this may be why my vit E was through the roof at the jun 19 test!!??!! (although could also be that they put the sample in the wrong vial - have to get it re-tested today).

HTH!
JL

Oh dear hlm286 that midwife sounds like she knows the square root of flip all.
Yes I have had that reaction but thankfully not from health professionals (a friend of mine asked me if I should really be thinking of having children and the weird thing is he really is a very good friend, but that comment hurt) - that is particularly upsetting for you because you're relying on them for your healthcare. Don't mind her! Make up your own mind....if you feel ok with trying again, go for it. Find a good obstetrician who will be supportive and treat you like an ordinary woman - whilst acknowledging the MS but no focussing on it.

There is a good book on the complexities of having a baby with MS see: http://www.amazon.com/Multiple-Sclerosi ... 0892817887 - I found it a bit depressing in places but the reality is different for everyone with MS. I have no regrets having my son, he has brought me immense joy and happiness despite it being very hard sometimes to manage active toddler and MS.

Edited to add: hlm286 - pregnancy, birth & parenthood has been a very "normalising" experience. Most of my experiences were just normal and shared by the other mothers and parents. It was nice to have problems that were NOT MS for once!!

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.