It Drives me Crazy

By Kristin Monday, March 10, 2008

It drives me crazy sometimes to hear expert doctors go on about being pregnant as being beneficial for MS. At a speech given by Dr. Caroline Whitacre, PhD at the National MS Society's national conference, she said, "Pregnancy is the best treatment for multiple sclerosis."(I read that in the most recent issue of Momentum, the National MS Society's magazine) For me, it was the WORST treatment for my MS. I have been pregnant twice. And in my 11 years of MS, the worst 2 attacks happened when I was pregnant. And they happened at the same time in the pregnancies. A statement like that probably drives guys crazy too because they can't get pregnant - a hardship I know they probably lament all the time - at least my husband does - NOT. He actually feels like he got a raw deal because I had 2 c-sections and didn't really go into labor Big Smile .

 

When I got pregnant, all I heard was how great it would be for my MS and I believed it. And my MS really wasn't bad. I had had 2 attacks prior to getting pregnant in the 5 years of having MS and neither attack was one that stopped me from doing most things (Ok - Tae Kwon Do was out, but I stretched in the back). I could walk, my legs were just a little bit weak and definitely tingling all over. I used my crutches for maybe 2 days during the second attack but I probably didn't need them, it was more of a security thing for me. So when I started having double vision 2 months into the pregnancy, I chalked it up to a weird pregnancy thing. It couldn't be the MS. All anyone ever said is how great pregnancy is for MS. Just the week before, I had lost taste in the left side of my mouth, also a weird pregnancy thing so I figured the double vision was the same.

 

Then the next day, I took a 2 hour nap. That was when my husband started worrying - I NEVER take naps unless I am sick. Later that evening, I convinced my husband that I was ok to attend a party given by his boss. I definitely shouldn't have done that. At the party, I knocked over a bottle of red wine because I thought it was one place, and it wasn't. At this point, my husband said I should talk to the host's husband, an oncologist. So I began by telling him about the double vision. Then I told him I was 11 weeks pregnant and he said, somewhat skeptically that it COULD be a weird pregnancy thing. Then my husband kicked me and said I had to tell him everything. So then I said, "oh yeah, and I kinda have MS." At which point, the doctor confirmed my husband's thoughts that this was an MS attack and I needed to call my neurologist first thing the next day. So, long story short, I went to see my neurologist. We waited 10 days to see if the attack would start to get better without the steroids since he didn't want to give me any medicine if he didn't have to. But it got worse, a lot worse. I lost 13 pounds and use of my right side - writing, eating, etc. which was difficult since I was right-handed and probably lent to the loss of weight, that and getting sick since my equilibrium was off with the double vision. So I went on prednisone 10 days after the attack began for a 10 day period. And the eye sight returned to almost normal by the end of the steroid treatment and 100% a couple of weeks after. The right side got better, but I would say it was a few months before my handwriting returned to normal. And then the rest of the pregnancy went great. The 20 week sonogram was scary, but everything looked good. I spoke to a doctor who is doing a study of Estriol (which is showing great promise) a hormone that is thought to help the MS that has an increased presence in women in their late 2nd/early 3rd trimesters of pregnancy. She said she wasn't surprised to hear I had the attack in the first trimester because the beneficial effects of the increase in Estriol didn't kick in until the later trimesters.

3/10/08 6:16pm

Kristen - I have been on many sites, and have never heard one of the many women who were pregnant , or thinking of , say that their doctors said it was the best thing for them .. many stories were quite the contrary, as yours, that they developed problems and that while they are able to have children , it was a very touch and go situation .. for the mother ....

 

I am sorry to hear of your experience .. I never had children, so I have no story to share , but always enjoy reading your shareposts .. and I believe you are on the right track, the doctors shouldn't lump all MS paients together and make these types of statments ... agserra 

3/12/08 10:40pm

Adrian,

 

Its funny, it always seemed to be the experts toting the wonders of pregnancy. My OB said that it seems like 1/3 of the women pregnant have problems during the pregnancy, 1/3 stay the same & 1/3 get better. I had always heard that being pregnant put someone in remission which is why I was in denial that I was actually having an attack. I had heard the chances of having a flare up after giving birth was something like 50% or so, but never WHILE pregnant. I remember talking with a nurse after the attack and her saying that she wished she could say that because I had the attack during the pregnancy I was off the hook for a flare up after having the baby but she couldn't say that. And as it turned out, she could have because I was great after I had both babies. I have had one treatible (sp?) flare up (in 4 years) and it was pretty minor. I was actually surprised that they were even going the steroid route.

 

We really thought it was a fluke with our first. And then I got pregnant again. I took the home pregnancy test on Friday night and on Saturday, my husband asked me if I was slurring. And when I went to write, I noticed my handwriting had changed. We didn't have to wait for the blood test to confirm that pregnancy. The MS attack did that for us. My neurologist just concluded that something hormonally must trigger the MS for me when I am 2 1/2 months pregnant.

 

Funny story, when I went to get the solimedrol for the attack back in 2005, I took a pregnancy test with me and made the nurse confirm it was negative before I let her give me the steroid. The nurse did say that was a first in her bookBig Smile.

 

Thanks for your comment.

 

Kristin

3/13/08 10:00am

Kristen - you will be okay .. it is good that you raise these issues .. others need all sides of this disease so they can make decisions .. that is why it is so important to share .. and you are brave , now knowing the "real" facts about your pregnancy , what course of action have you and your husband decided to take, if any ?

 

This is a good example for all of us, that if you read, hear or are told information regarding anthing about MS , that you must get all sides .. I am still waiting to get to the MS clinic here t learn more of "my" MS ..

 

my prayer for you is that with the knowledge you are now armed with about your MS , you and you husband can start to make better decisions or choices on what ever pops up after the birth or during the times that you recall having difficulties, or "flare ups" ..

 

so i am reading what i just wrote and hope you understand, there are no two patients alike, while we may experience similarities, our MS is just that , so you must be consistent in getting info from any and all your doc's , not the lump  them together, but you history, your treatments, your experiences and your MS .....

 

 

 

agserra                                             

3/10/08 9:06pm

Hi Kristin -

 

I'm a moderator for the site and just wanted to say a quick thanks for your posts.  I have been reading them for a bit now and really appreciate your humor and directness about your MS and the various issues that pop up.

 

Anyway - Thanks again - keep on writing.  Looking foward to the next post.

 

All the best, sue 

3/12/08 10:47pm
Thank you for your comment. I was starting to feel left out because I have seen you comment on others and not meBig Smile. I know of at least 1 other woman who had problems during her pregnancy so hopefully others will read this and potentially get back to me. I have often wondered if it was because of being on the Avonex for so long before I got pregnant and wondered if there were any studies on that. My first pregnancy attack was much worse physically and I had been off the Avonex for 5 months before getting pregnant. The second attack was not as severe physically (no double vision, just loss of use of my right side) and in that case, I was on the Avonex for the first month of being pregnant. So who knows. I am not a doctor, far from it so it is just my observation. But it does make me wonder.
Anonymous
Phyllis
7/ 8/09 11:44am

Hello:

 

My son will be 4 years old at the end of this month.  He is a beautiful healthy boy. BUT when I was 4 months preg. I had a terrible flare up, at which time, with the suggestion of my neuro, I opted for steroids.  Thankfully the steroids worked, but 2 months later, at 6 months preg. I had another Flare up.  I received Steroids for a second time.  My son was born at 8lbs, 15 ozs, happy and healthy.  I was afraid to get steroids, but my neuro said, that falling while preg. Was not a good thing, so I opted for the steroids?  6 months after my son was born, I had an awful attack that steroids would not fix.  So I went on Tysabri, I have been on Tysabri for almost 3 years now, feel great most of the time.  I am able to work full time and (most times) have enough energy to play with my son.  BUT now I am thinking of having another child, not sure if their are any statics of women getting off Tysabri to have a child.  My neuro told me if I experienced attacks the first time while preg. I can expect the same a second time.  Any thoughts and or information.  Anything would be greatly appreciated.

10/ 7/09 3:50am

Phyllis,

First let me apologize. The notification that I had a comment on my sharepost went to an e-mail address that I had forgotten to check and I am seeing this for the first time today.

 

As for any insights I can provide, I can't talk about being off the Tysabri because I have never been on it. I was on Avonex at the time of my pregnancies. I would talk to your OB & neurologist and maybe even Biogen about how long you would need to go off it. My gut is saying something but since I am not a dr, I am not even going to take a guess. I can say from an experience of someone I know, he was on Tysabri for years (he was in the trial) before they removed it from the market. He knew he was on the drug in the trial because he had such an improvement with his MS. He went off of it when they pulled it from the market and was on nothing for ~6 months until they re-released it. He feared that he would have relapses but that did not happen. So that is positive although they do say "If you have seen one MS patient, you've seen ONE MS patient" since this disease varies so much between people.

 

I did have an attack with my second pregnancy at the exact same time in the pregnancy (2 months for me) but physically it was not as bad as the first. I was lucky in that I did not have any flare ups post pregnancy with either child. My neuro said that there was something in my body chemistry that trigger the MS since having a flare up was not the norm. We chose not to have a third (we really had only talked about 2 kids anyway), but the 2 for 2 flare ups sealed that decision.

 

I hope that has helped some (albeit late).

 

Thanks for responding to the sharepost. I will have to fix the notifications so I find out sooner.

 

Kristin

 

 

4/20/10 6:34pm

I am so grateful for these posts.  My MS started in Oct 2008 when I was 12 weeks pregnant with my daughter.  I had Optic Neuritis in my left eye, put doen to raging hormones.  At 6 months pregnant I had pins and needles in my left hand and left leg.  The when she was 4 weeks old i lost sight in my right eye and more pins and needles.  I breastfed for 9 months then went onto Rebif which i have been on ever since.  I would love another baby in a year or so but I am terrified about coming off treatment and risking it.  Currently apart from impaired vision I am doing ok and scared to rock the boat.

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By Kristin— Last Modified: 10/26/11, First Published: 03/10/08