Multiple Sclerosis (MS) Expert Forum
How severe of MS?
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How severe of MS?

I am a 32 yr old female. Grew up in a cold climate. I've recently had a second episode of symptoms of MS, it was four years ago that I had a mild one (lip only bells palsy.) Since late December I have had a brain MRI, an upper and lower MRI, nerve tests, blood tests and most recently a Spinal Tap. My last symptoms were tingling and numbing of feet, legs, hands, lower back and torso. I felt what has been described as the "MS Hug" and I was very fatigued. I also had a sensation of a surge or current running down my spine and arms when I looked downward. My brain MRI had a minimal, almost invisible area that showed matter that pointed towards MS. My cervical spine MRI resulted in lesions and the spinal tap fluid tests came back with identified oligoclonal bands abnormal for demylination disease. The symptoms started and finished within about 8 weeks. I still have slight feelings of some kind of surge running down by spine when I look downward from time to time. My cell count, proteins, calcium, ace level, viral infection, fungal infection testing from the spinal fluid all came back normal. I have been able to walk and function as normal as I always have and still go to work every day in a professional, busy, active, executive office, type of job, but I've been much more tired. My neurologist is booked for another two weeks. So in the meantime, I'm looking for answers and help. Based on what you've read, how severe of MS, and what kind or progression would you guesstimate that I have?  
Between these two episodes of four years, I did get pregnent and had no symptoms or episodes like this. However, I had a terrible pregnancy with Twin to Twin Transfusion Syndrome, but my end result is a perfectly healthy son who is the light of my life. I would like to have another chance at a normal pregnancy and having another precious child, but this recent finding of MS has me worried about where I will be in 10 years, or even five!

Any thoughts or suggestions appreciated!
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669758_tn?1242334351
Your outlook is relatively good because you are a woman, young and did not have a severe initial symptoms.

Being on a disease modifying agent is the best intervention we knoe of in order to keep you as active as you clearly are.

I suspect that you have Relapsing-Remitting MS (RRMS).
8 Comments
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Avatar_n_tn
I was able to get in to my neurologist early, someone cancelled, so I got a call and off I went. Yes, you are correct, he said it is RRMS from all the testing we've done. Even though it's still so hard to diagnose.

I've looked over the DMA kits and think that Copaxone would suit me.

1.  Would you recommend that with the information I've given you?

My neurologist is not exaclty a comforting man, he really has poor bedside manner. He will discuss things with me, but absolutely dances around my inquires (without much eye contact either!) Something I just don't understand when delivering this sort of news to patients.

Another concern...We wanted to have another child.

2.  Is MS proven hereditary?

I cannot seem to find much information on that. All I read is it is possible, but I can't get my hands on any statistics.

3.  If we wanted to get pregnant, is Copaxone safe for the baby if pregnant? Or, should I wait to get on therapy until after pregancy?

I have a call into my OB and high risk specialist too on this, but any advice, help and 2nd opinions are comforting right now.

4.  The DMA's are very expensive, even w/ insurance. What, if any, help is out there with programs or financial assistance?

I'm sure this could be big list, but even if you or someone could point me in some good, legit directions, that would be great.

Thank you in advance, I appreciate it.
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Avatar_n_tn
As a woman with MS I have had the concerns too about having a pregnancy after diagnosis of MS.
Pregnancy actually puts MS into remission while you are pregnant, but the risk of relapse after pregnancy is higher than if you had never been pregnant. I would say that comes out to about neutral, wouldn't you? Female hormones have a suppressing effect on MS and other "autoimmune" disorders. There was a study done on estriol, a hormone that the body makes while pregnant, and the women who were taking it had their MS go into remission. Since then some have discredited the study, and the FDA has tried to outlaw estriol. The only way to get it right now is for menopausal or perimenopausal symptoms. Some women get perimenopause in their 30's. And then it has to  be made up by a compounding pharmacy, which there are some around, not too big a deal. The cost is very low.
Anyhoo - from what I could find the risk of MS in your child could be as high as one in 35 or so. But if you breastfeed very well (for up to 3 years) it will lay down a very thick coat of myelin in your child's brain as well as help their immune system. Not being breastfed and especially being put on cow milk formula in infancy is a major trigger for those of us who have the MS gene (of course, we don't find out until later in life).
My naturopath tells me that a pregnancy would be great for my body in suppressing the MS but I am not willing to do that until more ducks are in a row. LOL ; )

I am not sure if breastfeeding protects you from progressing in the MS but I think it may since you have all those extra female hormones. That is what I am banking on for future childbearing.
I am on Avonex and you shouldn't get pregnant while on Avonex as they don't know yet if it is a tetragen (cause birth defects). I would suspect that you would not want to be on a shot while breastfeeding either. You would have to look into it further.

As far as the cost of the meds, until the national healthcare stuff goes through, you have to find a better employer for yourself or spouse if the cost of the meds is too much. You can ask the National MS Society for financial help. The state is no help unless you want to "pay down" the difference between your income and the medicaid income eligibility level (below poverty line). Biogen Idec has a program for people who can't afford their meds that really helped a friend of mine. You could give them a call. I think they are the makers of a couple of the drug therapies but I don't know if they make the one you are considering. I chose avonex because it had the least number of injections LOL ; ) and luckily it is working well for me (Biogen Idec is the maker of Avonex).
Women are the ones who get autoimmune conditions the most and I think it maybe because we are not living our natural "cave woman" life of constant babies and nursing. MS is a first world disease and I think that has a lot to do with it. The women in previous generations who had the MS gene, it was masked by all the female hormones in their system due to pregnancy and nursing and of course they were probably nursed themselves. So the changes in childbearing and rearing practices could be part of why we are seeing more MS and other autoimmune conditions as time goes on. Of course we also have more plastics, etc. too (never microwave in tupperware or plastic wrap! in fact, don't microwave at all. Other countries have outlawed them.)
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147426_tn?1317269232
The available literature on MS and pregnancy is suggesting that women may be better off having had one or more pregnancies.

For a long time it was thought that pregnancy might be detrimental and cause a woman to have more disablility later.  This has not shown to be the case.  So, no, it does not appear to be a wash.  There is no general medical indication to avoid having a child for the sake of the mother's health, just the need to be prepared for a possible relapse after delivery.

Runmarker, B., Anderson, O, "Pregnancy is associated with a lower risk of onset and a better prognosis in multiple sclerosis," Brain (Journal) 1995; 118:253-261

Berdu P, Theys P, D'Hoghe MB, et al, "Pregnancy in multiple sclerosis: The influence on long-term disability." Clin Neurol Neurosurg 1994; 96:38-41

Another fallacy mentioned is "the MS Gene."  There is NO "MS gene."  There are dozens of genes implicated in increasing the genetic risk.  Exactly which ones cluster to increase the risk is not known.  I'm not sure where this data that a woman's MS risk is coming from.   It is not in any of the scientific literature I have read.  

Please tell us where to find hard data that early exposure to cows milk increases the risk of MS.

MKJ - Would you point me to any hard data (and I don't mean someone's opinion or vague generalities) that shows that prolonged breastfeeding reduces a childs risk of MS?  I doubt that data exists, but am willing to look at any of the studies.

There IS growing evidence that mother's Vitamin D stores during pregnancy and a child's Vitamin D stores while very young may influence the development of MS later.  I would note that Vitamin D is in low supply in breastmilk, though what is there is very bioavailable.  Prolonged breastfeeding in higher lattitudes and in children of darker skin has given rise to an increase in ricketts (a Vit D-deficiency-caused bone disease).

I write this not to disparage breastfeeding, but to warn all to be cautious about the "truths" that are offered with regard to what really does and doesn't protect us or cause us risk.  Many of this claims are easily disproved.

URBAN MYTH ALERT:  We all know that the Societ Union banned microwave ovens more than 30 years ago.  That ban has long since been lifted.  Please name ONE country where microwave ovens are banned and please use a reputable source for the information (not someone said so).

Quix
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Avatar_n_tn
Okay, so my OB and OBGYN Specialist both say that Copaxone is a Category B and is safe to take during pregnancy. They said it is safe because it is not an Interferon.

Does anyone have any medical statistics, white papers, or published studies that shows otherwise?

I need real facts here.

Quix - thanks for all your help and clarification. I appreciate it!

Thanks.

- Scared1976802
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864831_tn?1243622272
I took Copaxone and percocet during my last pregnancy and my daughter is healthy no problems at all. The specialist actually told me to not quit smoking so I smoked one cigarette a day. This was from my OB and a science center in Harrisburg , pa.

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864831_tn?1243622272
http://www.yelp.com/biz/maternal-fetal-medicine-of-central-pa-harrisburg

This was where I went to get ultrasounds every couple weeks.
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147426_tn?1317269232
I have read the same info on Copaxone, that there is no indication of harm to the baby.
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A related discussion, why is M.s. so hard to diagnose? was started.
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