I haven't had to rant in a while about MS, so maybe it's just that I'm overdue, but it seems that lately ignorance is rearing its ugly head again. I admit, before my diagnosis, I was fairly ignorant about MS as well. I honestly don't mind talking about it, answering questions, none of this bothers me. What does bother me is people who think they are the expert. Anyway, here are a few facts. And if you don't want to take my word for it, the National MS Society has a great website with tons of information.
* Multiple Sclerosis is NOT the same as Muscular Dystrophy
* It is estimated that 400,000 people in the U.S. have MS, although these numbers are thought to be much higher since it's not a reportable disease to the CDC
* I did NOT get MS because I drink Diet Coke! Or because of any other reason other than I have bad luck. It's an autoimmune disease, my body attacks its own myelin.
* It is OK to be pregnant if you have MS! Actually, because of the immune response and extra hormones produced in pregnancy, MS usually goes into a remission period.
* With the above being true, yes, the post partum period can be difficult. That being said, for me, I'm prepared for it and have already decided on my course of action. (For those of you who are curious, I'll be doing monthly IVIg infusions for a while so I can still breastfeed)
* MS does not mean I'm dying. Nor does it mean that I'm going to be in a wheelchair.
* No, I'm not passing it on to the baby. Seriously, if this were true do you honestly think I would have gotten pregnant? The decision to have a baby was not an easy one, and I still worry about all the what-ifs associated with MS and what they would mean for my child.
* My MS has been fine since I've been pregnant. Since my diagnosis I've been lucky to have only had mild symptoms, and since I became pregnant, the symptoms have all been gone.
I know there's more. I get asked some pretty heinous things sometimes, but this is all I can think of now. Maybe I should start a weekly post for MS Rumors/Updates.
One last thing, I received a "Save the Date" reminder for the 2009 Walk MS. This year the Anchorage walk will be April 18th. I will be putting together a team again, so be expecting an email with more info soon.
3 comments:
Is there any sort of hereditary link with MS? Just curious, I'm not say I think you shouldn't have kids - shoot everyone's got something going against them hereditary wise. I've tried to ask one of the Rad Onc's about radiation and MS but they're so busy it's hard to get a hold of them. Maybe one of the residents will know something...
And you want to talk about a field everyone thinks they're an expert? Tell people you work in oncology...EVERYONE knows more than I do! Just because you saw something on Grey's Anatomy it does not make you a specialist!
Yes and no on the genetics stuff. There is some correlation, but like with everything, nothing has been definite. Most of the studies have been with identical twins though.
I'd love to hear if they know anything in Buffalo about rad tx for MS
I talked to one of the residents, she didn't know much about radiation for MS but she said she'd look into it. She told me that UB has a HUGE MS research center (I guess Buffalo has one the the highest rates of MS in the country). She's wicked smart so if there's detailed info on it she'll find it. I'll let you know when/if I find anything out.
And yes, yes I could use some more glass half fullness.
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