Reader call: Mother with MS

Angela writes:

"I'm in the process of being diagnosed with MS (clinically likely - no official diagnosis yet). The worst part of it is that my husband and I planned on starting to try get pregnant the month that I started having symptoms (last month). I'm terrified, and am still hoping that my symptoms could be something else. But, if it's not, I'd love to hear from other mothers who have MS - I know that you can get pregnant (as long as you take a break from the medications) - but I want to know what life is like for a mother with MS. Is it do-able? Should I rush and have babies as soon as possible (I'm 29) before my symptoms worsen? Is it fair to kids to have a mother with MS?"

I don't know much about MS (multiple sclerosis). What I do know is that people have used T-Tapp to control MS symptoms, so that's something to look into.

Also, I think what's fair to a kid is to have a mother who loves them, whose eyes light up when she sees them. What she looks like or how much money she has or what kinds of illnesses and conditions she has are so minor compared to how she treasures them and treats them. It's possible that your children will wish you didn't have MS (for your sake and for theirs), but I can't imagine that they'd wish you weren't their mother.

Anyone out there with MS (or any other autoimmune disease or other chronic health condition) want to comment?

Comments

[Linda]

I don't know about MS, but my father-in-law had a degenerative neuro disorder and I know my husband treasures the 17 years they had together. He was in a wheelchair and needed various support equipment, but he was a wonderful man. Yes, losing your father when you're a senior in high school sucks big time, but he would never trade him for not being born at all or for a different, physically healthy father.

[Nutmeg]

My husband has MS. He had several years worth of symptoms before he was diagnosed the week we got engaged. He was diagnosed due to optic neuritis and an MRI that looked like swiss cheese. It did NOT look good for him.

He is a doctor, at the time in his internship year and he was working 100 hours a week or so. He has only taken one sick day since his diagnosis 5 years ago, and generally works 12 hours a day. The problem with MS is that everyone's course is different and everyone's symptoms are different.

His medicine is very effective and he hasn't had a relapse yet, and his most recent MRI FINALLY showed no active lesions. I hope this speaks somewhat to is it fair. He isn't the mother, but he works very long hours and comes home and helps clean, does almost ALL the nighttime parenting to our really TERRIBLE Sleeper. Depending on the form of MS you have, it could be a really long time before your symptoms worsen. MS these days isn't like it used to be, really. For some people the medicines aren't as effective and the course can be worse. We haven't been able to see the long term efficacy of the new disease modifying therapies, so who knows. Also, 10% of people never have another relapse after diagnosis.

As far as pregnancy, I've read that some people with autoimmune problems experience fewer symptoms during pregnancy, as pregnancy is an immune suppressed state.

Good luck! I hope you don't have MS, and I know how devastating the diagnosis can feel at the time, but it is a very, very small part of our life right now, 5 years after diagnosis (and 10+ years after my husband started having what were his first relapses) and one year into the life of our our son who used to be colicky and refluxy and now is just sort of constantly cranky.

[Lorraine]

My 62-year-old mother has MS (and arthritis in both knees, whee!). I'm 34 now, and she was diagnosed when I was in HS, but now they think she had it for a long time before that. I'd love to tell you more about her disease and prognosis, but she does not talk about it and will not answer basic questions about her health, claiming that we are being "nosy."

So, in addition to what Moxie said - as long as your children are loved and cherished, that's what is important - I'll add, be open about your illness and limitations, at least once your child is older. I love my mom, and I'm grateful for the life she gave me and the way she raised me, and having this mysterious cloud of illness hanging over us now makes it harder to relate to her. Even as she's holding my son, I wonder if she'll be around when he's 5, 10, 15 - and I have no way to guess at that.

[Lorraine]

oh!! and good luck - my thoughts are with you!!

[Amy]

I had a friend in my SAHM days who had MS and a little girl. Her symptoms came and went and were quite bad sometimes, but I doubt either she or her husband would have traded a moment with their little girl to make life easier on the mom or dad. (And she'd already been diagnosed with MS before she got pregnant.)

I will say this. My friend's husband was very available (had a very flexible job) so that when her symptoms were bad, dad could stay home to help. Her parents also lived in town so they helped a lot. They made the decision to just have one child b/c they worried that if the MS were genetic dad might have two disabled people to care for at some point down the line.

So, being a mom with MS is certainly doable. And I don't think either of these parents regret having their little girl... and the little girl always seemed very happy and well adjusted.

Good luck.

[Karmyn]

My mother has MS. She was diagnosed shortly before she married my father. They had 3 children. For my mom, she felt the best she had ever felt during her pregnancies. She did have quite a bad attack after my brother was born (back in 1985), but then, she stabilized and didn't have another serious attack for many years. There was some decline in her fine motor skills and her ability to walk, but she stayed home with us, and to this day takes care of all of the shopping, cooking, and cleaning for herself and my father.
Is it possible? Absolutely!! I believe my siblings and myself had a great childhood. I didn't even realize my mom had a disease until I was 10 or 11, until then, I thought everyone's mom had trouble walking. But my mom loved us more than anything and took great care of us. I truly believe that you are capable of far more than you think. You will do what you need to do for your children.
If you have any other questions, or want to chat more, please feel free to email me (missusem_at_yahoo_dot_com). I'd love to try to help you.
Don't let your pending diagnosis stop you and your husband from having children and being wonderful parents to them!!!

[Lauren]

My father was diagnosed with MS when I was almost 4, so I don't really remember life without it. Growing up I was aware of his physical limitations and that he couldn't do some of the things other fathers did, but he is my dad and I love him. Period. Parents and children don't love each other conditionally.
Also, my parents kept a generally positive tone, answering questions if they came up, but not bringing up the MS as a daily )or weekly) family conversation.
Good luck! And look into yoga too!

[Kelly]

Not MS but an auto-immune disease in that I'm type-1 diabetic (insulin dependant) and a SAHM. I've had many times where I over-react to my boys because I'm not in control, and once where I was on the kitchen floor having a seizure in front of my oldest (he's 3yrs) and that's when the guilt *really* hit me for a while because he came over (hubby later told me) and tried to help Mommy feel better and it freaked me out that a 3yr old should have that kind of situation thrust upon them (and melted my heart that he tried to help me). Challenges breed character, though, and my sons will be more sympathetic as adults because of it. We live with the life we've got and make the best of it.

[annaray]

My partner has MS, diagnosed about three years before we had our first child. I'd be lying if I said the MS doesn't make things a little harder -- she gets tired very easily, can't deal with heat in the summer and sometimes just needs to spend a day horizontal. At the same time, she's a wonderful, attentive parent and spouse. I think the key is knowing your limitations -- knowing that if you spend a day out hiking or shopping or being active, you're going to need to take it easier the next day -- and structuring your life accordingly. Plus, those pregnancy hormones really kept the symptoms in check. She felt better during the second trimester than she has at any other time since her first attack.

[m]

I don't have MS, but my best friend's cousin (who is like her sister) has it and had her first child two years ago. I'm going to email this to my friend and hopefully she can pass it on to her cousin. Angela, please check back in a week or so to see if anything has been posted by her. I know that the time between when she was diagnosed and when she got pregnant was relatively short, so she may have some really good insight.

[giddy]

My mother's aunt had MS, and was diagnosed I think when her 4 children were in primary school. She began to use a wheelchair at some point when they were in high school, and lived into her mid to late 70s (maybe even early 80s?). She was a wonderful woman/wife/mother. It was a lot of work for my great-uncle to take care of her as the disease progressed (particularly as they both aged), but it was never a big deal for the family. Based on some of the other commenters' comments, too, i wouldn't be surprised if current medications, etc. might help delay the progression to where it would be less debilitating than it had been in her case.

[ALG]

My grandmother, who passed away in June at the age of 79 from ovarian cancer, had MS and raised four children in classic 1950s style--took care of everything domestic while her engineer husband worked all day. She wasn't diagnosed until the early 1980s, though, when she was around 55. My grandfather once told me that she'd had symptoms since the 1960s, when she was 35-40. Starting in the 1980s, she used a cane and then a walker and finally a wheelchair. She was a great grandmother throughout, and made it obvious that she loved us all so much.

She was the uncomplaining sort, so I don't know how she felt about it, or how hard it was for her to raise her kids when her symptoms started. But the fact that she did it indicates that it is possible. It may help that she had her kids when she was young (23-31), before the symptoms started.

[Joe]

Often MS is caused by Aspartame multiply female MS. You can read about here:
http://www.bolenreport.net/feature_articles/feature_article062.htm

Also, I know people who have recovered by using hypnosis.

[Kathy]

My mom has an MS-like autoimmune neuro-muscular disease. It got very bad and was diagnosed (sorta) when I was in 8th grade, although one of her symptoms (vitiligo) actually started when she was much younger, I think.

My mom is the Best Mom Ever. I wouldn't trade her for any other mom. We did learn some life lessons from my mom's illness, though I'd gladly trade in the character-building experience if my mom could have less pain.

People lose their mothers to cancer, to car accidents, to heart attacks. I consider myself very lucky to have my amazing mom in my life, chronic illness or no. So don't let your diagnosis hold you back from having children.

That said, there are some things you can do to make it easier:

Be very aware of your limitations, and don't push yourself too hard when things get busy. Mom always made Christmas amazing, but we all would've been happy with fewer gifts, spaghetti for Christmas dinner, and a messy house if it meant that Mom didn't push herself so hard that she made herself sick. That said, I don't think she ever missed a concert or school play, and that meant a lot to us.

Have those babies now! (Or as soon as your doctor thinks is a good idea.) Depending on how quickly your particular course progresses, it may be much easier to be picking up babies and running after toddlers now than down the road. You want to be as healthy as possible for the early years.

Little kids understand more than we think, so be careful about what your kids hear at doctor's appointments. There's a family story about how after hearing the doctor explain to my mom the seriousness of her asthma, my sister (I think she was a preschooler at the time) asked my dad in all seriousness, "Daddy, when Mommy dies, can we get one of those pretty blond mommies who doesn't wear glasses and whose ears don't stick out?" (For the record, although my mom is a brunette with glasses, her ears are perfect.)

I'm sending lots of positive thoughts your way!

[Beverly]

I'm 34 years old, and I was diagnosed with MS almost ten years ago, after having had symptoms for three years prior. At that time, I already had one child, who was 18 months old, and now I have two more with #4 due in mid-February. I can tell you first-hand that it's definitely do-able!

As others have said, pregnancy often acts as a sort of "shield" from auto-immune attacks, meaning that pregnancy itself is rarely a problem. As far as child-rearing goes, it's really hard to say how much of an issue MS would be any particular person, as everyone's disease course is different.

I've been fortunate and have had very little difficulty, both because I seem to have a fairly mild case (some slight permanent disability in my left leg is the only "lasting" mark left so far; otherwise, most of my symptoms are sensory), and also, my husband is a very supportive partner and hands-on dad. My biggest issue is that I do tire easily, which I suppose does impact my kids to some degree, but it's nothing we can't manage.

If you'd like to chat more, or if you have any specific questions I could help with, my email is beverly AT tjerngren DOT net -- I'd be happy to hear from you!

[Angela]

Thank you, everyone! I'm going in next week for what I assume will be my official diagnosis. At that point I'll have to decide whether to go on medication or start trying to get pregnant right away. I'm leaning towards the latter - since, as many people have said, pregnancy provides a respite from symptoms, and because I'm not going to get younger or healthier! As of now, I'm relatively symptom-free. I had a bad first attack - where my vision wouldn't stop moving around. Once they got that under control, I've been fine. So, assuming my MRI next week looks okay and my doctor says I'm stable enough to have a baby, I think we'll try. It's a tough call, but I guess I just have to go with my gut (even if it wouldn't be my doctor's first choice - they'll always lean towards meds first, I think).

Again, thank you. I really appreciate the advice, well wishes, and wonderful stories about your mothers, spouses, etc. Thanks!

[beth]

Little late to the game here, but I just want to echo all the positives.

My mother was diagnosed in 1962, but had symptoms since age 16. She would have double vision and blindness. Relapsing-remitting with some permanent damage to her gait throughout the years.

She had me at age 37 in 1979, she was on ACTH the whole time, and I'm fine. She went into remission and then some during pregnancy and felt fantastic. She never had a relapse after that and at age 65 she was taken off Actigel and her MS was considered "burnt out."

So yeah, make babies. Obviously you can also email me for more explanation of my experiences.

When I was a senior in high school we got our "permanent records" back. On the top of mine it said "Notice: Mother Disabled." HAH, no house has ever been so clean or organized! Really, like others' posts, I never really noticed a difference between her and other moms, she just didn't drive.

I guess my only suggestion is to watch your calcium and vitamin D intake and try to avoid osteoporosis as much as possible. THAT has been far more debilitating to my mother than her MS (broken hip, knee replacements). THAT is what put her in a walker at 65 finally (well, only when she goes on long trips.

Good luck. Breed.

[beth]

Nerrr, I didn't realize it didn't display emails.

For more anecdotal information email beth_at_monkey_dot_org.

[brandy]

My mother was diagnosed with MS when i was 7 years old and my brothers were 5 and 9. My mother's attacks started when her body simply juts stopped working, her legs would give out or half of her body would lose sensation.

My mother has been blessed with a slow progressing case of MS, but even still I can remember just a few years ago her saying that had she been diagnosed previously she would not have had children, and to this i say why not? as before mentioned various things can affect the parenting that aa child receives. And i would not trade my mother for the world, she is my confident and friend, she is so strong.

My mother's course of action in 1992 when she was diagnosed was to not go on meds (she has never been placed on meds, but has started a vitamin regime) due to the newness of them at that time. My mother stopped working and made sure not to push herslef too far, she has not had a severe attack (which for her is the left side of her body losing feeling and her vision blurring) in over 6 years. She is loosing the feeling slowly belwo her waist, she says she probably has about 50% of her feeling left, but shes still walking 15 years post diagnosis.

She is expecting her first of many grandchildren in a months time and she is constantly spending time with fmaily and friends. She appreciates her life and the gifts that she has.
I am thankful that my mom had all 3 of us, and if you are able to give a child a loving, caring and supportive home i do not think that a degenerative disease can take away from that.

I relaize this was a little late but better now then never.

good luck

[brandy]

and my mom says potassium is huge she eats at least 2x bananas a day, shes says if she doens't have one that she is more likely to have an 'episode'

randomn but somethinng is working for her

[AmyinMotown]

I'm so sorry this is happening--you seem to have a great attitude but this has to suck. My cousin's wife has MS, and had been diagnosed before she ever got pregnant. I don't know her well, but she seems to be a very effective mom. Good luck, and let us know how you do!

[babybobsmama]

Hi, I'm also a mom with MS. My neurologist had me stay on meds (copaxone) throughout trying to conceive, pregnancy, and now breastfeeding. I was diagnosed 6 years ago and have no lasting symptoms; I work full time and am my son's primary caregiver. MS does not mean your life is over at all. Please email me if there is anything I can help with - cl553 at columbia.edu

[Elizabeth]

When my son was a year old, I was diagnosed with MS. That was 4 years ago and I wouldn't give up being a mom for anything.

My doctor has always encouraged me to have another child if that is something my husband and I want to do. So first of all, I would suggest you make sure that your doctor is supportive of whatever decision you make.

Having a child is exhausting, even without MS. I had to stop beating myself up over the fact that I couldn't do it all and I learned to accept help from others. I made the decision early on that I'd rather use my energy to play with my son than to keep an immaculate house, so I hired a cleaning person for a few months until I got things under control. I also hired a mother's helper to lend me a hand over the summer. She could play outside in the heat with my son when I was unable to do so. I'm not afraid to ask my friends and family for help when I need it, too. They forget about the MS beacuse they can't see my symptoms, but that doesn't mean they don't want to lend me a hand. There's no shame in admitting you need help.

My last piece of advice is to learn to take naps. Don't think about all the things you need to do while your child is sleeping. The best thing you can do for your child and for yourself is to be healthy and well-rested. Let go of the guilt and get some rest!

Being a parent with MS is difficult, but I have no regrets. Please email me if there's anything else you want to talk about - elizabeth_hagopian at hotmail.com

Good luck!

[dregina]

There is a fantastic author out there named Nancy Mairs who is the mother of two adult children and has MS. She was diagnosed when they were young. She wrote a book of essays called Waist High in the World, and several of them discuss how her MS affected her role as a mother, how it affected her children. I would recommend it with the caveat that she has a particularly fierce and unrelenting form of MS, and for someone newly diagnosed, some of what she writes about may be scary to read.

[Jan]

I work with a woman who has MS and six (6)! children. And a full-time job. She inherited some of those kids (her husband's grandchildren), so she didn't go through infancy with all of them, but she has told me that her symptoms went away completely while she was pregnant.

Just another anecdote showing that it can certainly be done. Hugs to you, Angela, as you deal with this diagnosis. It has to be terribly hard and scary, regardless of what you decide to do about children.

[DEE]

I'm a mother with MS. In fact, I'm the best friend's cousin that was referred to by M. She forwarded me the link, not knowing that I'm a regular reader.

I was diagnosed at 30 after my second relapse. My first (what we now know was a) relapse had been three years prior to that. I was diagnosed four months before my wedding. At the time of diagnosis, the doctors reccommended that if we wanted to have children we should do it sooner, rather than later. We took their advice to heart and I was 11 weeks pregnant when I got married.

The course of my disease was pretty rocky at the begininng. I had a few really bad months right after I was diagnosed and then a severe relapse the day before my wedding. In retrospect that wasn't surprising given the stress I was under. I had one further attack when I was about 5 months pregnant, although we still aren't sure if that was just the combination of the extreme heat that summer and being 5 months pregnant.

The good news is that my daughter was born a healthy 8lb 3oz one week before her due date. I breastfed her for 6 months and then after the results of the MRI weaned her and began treatment with Betaseron. The even better news is that I had another MRI several months ago and the Betaseron seems to be working really well for me.

I have had no serious attacks in 2.5 years.

As far as it impacting me being a mother, I don't think it does. Occassionally, I feel tired and get what I can only describe as a 'buzzing' in my extremities but a good night's sleep usually takes care of it. I have an extremely supportive husband so that helps a lot. However, I do work a full-time somewhat stressful job and perform all of the usual 'work outside the home' mom jobs, including the daycare pick-up/drop-off and volunteering on a committee at her non-profit day care.

I think what being a mom with MS has taught me more than anything is to really set my priorities. The only things that really matter in my life are my family and my health. Nothing else.

I used to be the oh-so-typical type A who never said no to any request. Now I'm a lot more selective. I think my life is richer for it though.

One more thing, if you do get the official diagnosis, give yourself some time to get used to the idea. Don't ignore it though. I think my problem at the beginning was not being aware of how it would manifest and what to do when the symptoms came on. Now I know that it's not something to push through. All of my experience is that the best thing is to rest.

I'm sorry that was so long-winded. I'll admit that since my diagnosis I've been looking for an outlet for this conversation. The only support/discussion groups that I have found are not people in my situation. It's wonderful to hear from other parents with MS.

If you have any questions or just need to vent on symptoms that are difficult to deal with (and I've had most of them), please email me. Just put ask moxie MS or something like that in the title so that I don't think it's spam.

Best wishes for your diagnosis this week. If you do get the news you're expecting, know that with time you will feel better.

Okay, promise this is the last thing. My neurologist told me when we were talking about whether we should have children that the MS should not be a factor. She said that studies have shown women with MS who have children actually have a better disease course.

email me if you want

pipersmom74 at yahoo dot ca

[cherylc]

I don't have MS, but I have rheumatoid arthritis. I was diagnosed in the post-partum period after my first child. I was really sick the first year and a half after she was born and it was HARD. It was terrible, at times, in fact. It was totally worth it, and I'm now pregnant again with my second (my daughter is six), but I couldn't have even thought about raising another child for a few years after the first. Also, most automimmune diseases go into remission during pregnancy, but mine gets worse. It's manageable, but I think it's important to note that the going into remission thing is a probability, not a certainty. (I should also note that I work fulltime, which probably makes the physical symptoms worse.)

My point is not to skip having kids, I do believe it is very much worth it, and I'm super happy being a mom. But I would make plans for it being hard, and needing help. Then, if things go really well, it's a great bonus.

[Michelle]

The gifts you will be able to give your children will far outweigh any physical or health limitations.

My best to you and my prayers that it is not MS - but even if it is please don't let that alone discourage you from having children. Your children will be lucky to have such a caring, thoughtful mother.

[Kathy B.]

Angela -- my thoughts are with you as you await your diagnosis. I have an "assvice-like" question -- do you drink a lot of diet sodas? Some research points to aspartame (the sweetener in diet soda) as a culprit in MS-like symptoms. It is very controversial at this point in time, but there is some evidence that women who quit drinking diet sodas (and using aspartame period) showed great improvement. On the other hand, there rare those who say that there is no correlation. Just thought I'd put it out there for what it's worth.

[N]

Another mother with MS here adding my encouragement and anecdotal two cents. I was diagnosed with relapsing-remitting MS in 2000, went on Avonex right away, had a few exacerbations along the way, went off of medication in 2006 before conceiving at age 34. My daughter is now 14 months and I just went back on the Avonex. I stayed off of it to breastfeed for a year-- had frequent checkups by my neurologist who said that as long as I stayed asymptomatic and weaned at a year, he would support this decision. I had no MS-related anything (even the little twinges that had become a daily part of my life) all through pregnancy and nursing. So now that the lovely nursing hormones are petering out, we'll see where things stand, but i'll list the(mostly minor) ways in which MS has affected things so far:
-- I did temperature and mucous charting (a la Taking Charge of Your Fertility, by Toni Wechsler) before and after stopping medication and contraception so that we could be, um, targeted about trying to conceive. So, no carefree spontaneity there.
-- I had a very hard time finding a midwife who would take me as a patient, despite the fact that my neurologist said that I was in no way high-risk and that there was no reason not for me to have a midwife birth. I spoke with most of the midwives in the five boroughs of NYC before finding the fantastic practice that took me.
-- Had the embryo/ my daughter tested positive for Down Syndrome, I would have terminated the pregnancy. My husband and I agreed that we would not have decided this if it were not for the MS, but he felt strongly that he was prepared to care for a potentially disabled spouse but that he/we did not have the resources to care for both a disabled spouse and child. Which I understood.
-- My neurologist did recommend against my having too-prolonged a labor, and conveyed this to my midwives. This resulted in my getting pitocin when I was stalled at 9 cm to speed things along. Everything worked out beautifully-- I was able to have the unmedicated, otherwise-intervention-free birth I had wanted, but yeeow.
-- I was fully prepared not to breastfeed if the MS presented after birth (which it does for some women)and I had to go back on medication immediately. Which doesn't seem like a big deal, but in certain mothering subcultures (which I sort of found myself in) formula feeding is presented (subtly and outright) as tantamount to child abuse. I had to keep reminding myself that it was more important that my daughter have a healthy mama and formula than the opposite.

Apologies for the length of this, which must come off as quite self-involved. I hope some of the details are helpful. In sum, I realize that I have been very, very lucky so far to not yet have my mothering affected by MS, but 14 months in I can not imagine any scenario (and I am aware of all of the worst cases) in which this would not have been absolutely worth it!

[N]

Another mother with MS here adding my encouragement and anecdotal two cents. I was diagnosed with relapsing-remitting MS in 2000, went on Avonex right away, had a few exacerbations along the way, went off of medication in 2006 before conceiving at age 34. My daughter is now 14 months and I just went back on the Avonex. I stayed off of it to breastfeed for a year-- had frequent checkups by my neurologist who said that as long as I stayed asymptomatic and weaned at a year, he would support this decision. I had no MS-related anything (even the little twinges that had become a daily part of my life) all through pregnancy and nursing. So now that the lovely nursing hormones are petering out, we'll see where things stand, but i'll list the(mostly minor) ways in which MS has affected things so far:
-- I did temperature and mucous charting (a la Taking Charge of Your Fertility, by Toni Wechsler) before and after stopping medication and contraception so that we could be, um, targeted about trying to conceive. So, no carefree spontaneity there.
-- I had a very hard time finding a midwife who would take me as a patient, despite the fact that my neurologist said that I was in no way high-risk and that there was no reason not for me to have a midwife birth. I spoke with most of the midwives in the five boroughs of NYC before finding the fantastic practice that took me.
-- Had the embryo/ my daughter tested positive for Down Syndrome, I would have terminated the pregnancy. My husband and I agreed that we would not have decided this if it were not for the MS, but he felt strongly that he was prepared to care for a potentially disabled spouse but that he/we did not have the resources to care for both a disabled spouse and child. Which I understood.
-- My neurologist did recommend against my having too-prolonged a labor, and conveyed this to my midwives. This resulted in my getting pitocin when I was stalled at 9 cm to speed things along. Everything worked out beautifully-- I was able to have the unmedicated, otherwise-intervention-free birth I had wanted, but yeeow.
-- I was fully prepared not to breastfeed if the MS presented after birth (which it does for some women)and I had to go back on medication immediately. Which doesn't seem like a big deal, but in certain mothering subcultures (which I sort of found myself in) formula feeding is presented (subtly and outright) as tantamount to child abuse. I had to keep reminding myself that it was more important that my daughter have a healthy mama and formula than the opposite.

Apologies for the length of this, which must come off as quite self-involved. I hope some of the details are helpful. In sum, I realize that I have been very, very lucky so far to not yet have my mothering affected by MS, but 14 months in I can not imagine any scenario (and I am aware of all of the worst cases) in which this would not have been absolutely worth it!

[N]

Another mother with MS here adding my encouragement and anecdotal two cents. I was diagnosed with relapsing-remitting MS in 2000, went on Avonex right away, had a few exacerbations along the way, went off of medication in 2006 before conceiving at age 34. My daughter is now 14 months and I just went back on the Avonex. I stayed off of it to breastfeed for a year-- had frequent checkups by my neurologist who said that as long as I stayed asymptomatic and weaned at a year, he would support this decision. I had no MS-related anything (even the little twinges that had become a daily part of my life) all through pregnancy and nursing. So now that the lovely nursing hormones are petering out, we'll see where things stand, but i'll list the(mostly minor) ways in which MS has affected things so far:
(continued below)

[naomi]

Another mother with MS here adding my encouragement and anecdotal two cents. I was diagnosed with relapsing-remitting MS in 2000, went on Avonex right away, had a few exacerbations along the way, went off of medication in 2006 before conceiving at age 34. My daughter is now 14 months and I just went back on the Avonex. I stayed off of it to breastfeed for a year-- had frequent checkups by my neurologist who said that as long as I stayed asymptomatic and weaned at a year, he would support this decision. I had no MS-related anything (even the little twinges that had become a daily part of my life) all through pregnancy and nursing. So now that the lovely nursing hormones are petering out, we'll see where things stand, but i'll list the(mostly minor) ways in which MS has affected things so far:
-- I did temperature and mucous charting (a la Taking Charge of Your Fertility, by Toni Wechsler) before and after stopping medication and contraception so that we could be, um, targeted about trying to conceive. So, no carefree spontaneity there.
-- I had a very hard time finding a midwife who would take me as a patient, despite the fact that my neurologist said that I was in no way high-risk and that there was no reason not for me to have a midwife birth. I spoke with most of the midwives in the five boroughs of NYC before finding the fantastic practice that took me.
-- Had the embryo/ my daughter tested positive for Down Syndrome, I would have terminated the pregnancy. My husband and I agreed that we would not have decided this if it were not for the MS, but he felt strongly that he was prepared to care for a potentially disabled spouse but that he/we did not have the resources to care for both a disabled spouse and child. Which I understood.
-- My neurologist did recommend against my having too-prolonged a labor, and conveyed this to my midwives. This resulted in my getting pitocin when I was stalled at 9 cm to speed things along. Everything worked out beautifully-- I was able to have the unmedicated, otherwise-intervention-free birth I had wanted, but yeeow.
-- I was fully prepared not to breastfeed if the MS presented after birth (which it does for some women)and I had to go back on medication immediately. Which doesn't seem like a big deal, but in certain mothering subcultures (which I sort of found myself in) formula feeding is presented (subtly and outright) as tantamount to child abuse. I had to keep reminding myself that it was more important that my daughter have a healthy mama and formula than the opposite.

Apologies for the length of this, which must come off as quite self-involved. I hope some of the details are helpful. In sum, I realize that I have been very, very lucky so far to not yet have my mothering affected by MS, but 14 months in I can not imagine any scenario (and I am aware of all of the worst cases) in which this would not have been absolutely worth it!

[n]

so sorry for the repeated posts above-- i kept getting an error message and was not aware that each attempt posted.

[bree]

My grandmother had six children and MS. As I understand it, the course of the disease was worse then because we have better treatment today. I know it wasn't easy - by the time my mother (the third child) was about 12 grandma was walking with a cane and needed a lot of help from the kids with the chores. She lived to about sixty, though she was paralyzed from the waist down by the time I was a baby, and from the neck down by the time I was an adult. Even with the difficulties it caused her husband and children, I know no one in the family ever regrets the choice to have had those kids. Grandma and Grandpa gave them the best upbringing they could, and I think once the kids were older they appreciated it even more because they could see how hard it was. Grandma's only regret (to my knowledge) was that she didn't have the 'baker's dozen' she wanted!

[Sylvia]

Hey- I'm another new mom that had a similar situation- I had one episode 2 summers ago that has left me in the limbo of Clinically Isolated Syndrome (or "if it happens again we call it MS"), at high-risk for developing MS. My episode started in June and lasted through July. I started to feel better, but due to not having real health insurance (but that's another post) my fiance and I had to postpone the wedding... In late August we had a commitment ceremony, and 9 months later our little guy arrived! I did tons of research, and everything I read said during pregnancy you are much less likely to have a relapse (they're testing hormonal treatments now for MS because of this protective effect) and while more likely to have a relapse after, it doesn't affect long-term course.

My personal experience was this: no relapse as of almost 2 years later. I of course worry about possible disease progression, but then again, I could get into a car accident more easily. My neurologist was encouraging me to get on Avonex after giving birth, but I decided to breast-feed for at least a year. As far as the relapse rate after birth, my personal thought is that if stress is a major factor in triggering relapse, which research indicates it seems to be, then doing all you can to learn about the positive possibilities of giving birth is important. I had an amazing birth experience using part-hypnobirthing techniques, no meds, and also from making the choice to have a birth team, including a doula (which you can have at any income level) that supported me and didn't over-medicalize/institutionalize the experience. I don't know if this was a reason for staying healthy, but I know that being calm and happy would have helped me whether I had a relapse afterwards or not. The medical system in this country does little to help women feel empowered by birth, and instead prepares for worst-case scenarios, which actually often initiates them- the c-section rate in this country is absurd! But planning is also a good thing- I did make sure that I had extra help arranged for afterwards (by family and friends) in case we needed it.

Oh, and I drink a diet soda maybe every 4 months. The aspartame thing has been disproven- MS is a multi-faceted disease that looks like it has both environmental and genetic factors.

Lots of luck! Others have offered, but I will as well- my email is eowyn *at* bigpanda (dot) com

[Rhonda]

I don't know to much about MS but my sister was diagnosed this year.She is now fighting for herself and her two children. There are these people who I will not name are trying to take her chidren away from here. Just because a mother has MS doesn't mean she can't take care of her children. I can only hope that god is looking over her and her children.