Vent about misinformed professionals

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Vent about misinformed professionals

Postby hlm286 » Thu Jan 14, 2010 9:29 am

Ok, I understand that it would be too hard for doctors to learn detailed information about every disease, but I'm beginning to get frustrated with the fact that I was just diagnosed with MS 6 months ago and I already know more than most of the doctors I've seen! (Other than my neurologists and MS specialists of course, they're the only ones that give me reassurance.)

My first appointment with the MS clinic, they recommended me to try and have more children since that's what I wanted before I start any medications. So I happily took their advice and now I'm pregnant.
Well, when I called my midwives to see if they had experience with people with MS, the one midwife just went on how I should go get testing done to make sure I can't pass MS on to my child and my husband should get tested as well to make sure he's not a carrier! Well that was the first situation that annoyed me to say the least.

So next my midwives have to set up a consult with me with another doctor to see if I'm suitable for midwifery care. I just had my appointment with my MS doctor and he said there is NO reason they should treat me any differently than any other pregnant woman. MS has no affect on pregnancy, I can't pass it to the baby, and he was going to write them to tell them that.

Well I had my consult with an OB today and first off, he introduces the appointment as "your midwives required this consult because you have a medical condition that can affect your pregnancy". (Ok, wrong, it doesn't usually affect pregnancy, if anything, pregnancy provides relief.) Then he goes on to say that as on OB, there is no reason that I shouldn't be able to have midwives, I should be fine during pregnancy, however, your chance of relapse are higher after the birth (yes, true) and "MS is a hereditary disease so they might want to have that tested after the birth". I said it is not proven that it is hereditary, my MS doctor said that it is just more common in caucations, women, and if you live in a cold country. Therefore if your baby is a girl, white and lives in Canada, yes, their chances may be higher. And having a family member with it may increase your risk a little. And there's no testing to see if you can pass MS!!! I'm so sick of hearing that I should get tested!! It's not an infectious disease, I'm sick of the pity parties, I'm sick of people looking down on me for getting pregnant with MS, I'm sick of the "advice" of professionals who have no idea what they're talking about!

I'm just venting because I figured where better to go than the people who actually do understand where you're coming from. Does anyone else have experience with people like this? Isn't it frustrating? I know I'm the one living with this disease so I've researched it up and down and am trying to learn all I can, but seriously, can't they learn a bit more about things in school if they're going to become doctors? I'm sick of hearing it's an autoimmune, hereditary disease and I should get tested. None of that is proven yet and there's no testing to see if you're a "carrier"!

Well thanks for listening and letting me get my frustrations off my chest. :lol:
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Postby SandyK » Thu Jan 14, 2010 1:55 pm

hlm286--I could cripe with you for hours on this subject. I have witnessed myself the inattentiveness and misinformation from medical professionals for years. All I can say is enjoy your pregnancy and the new arrival to come. I chickened out having children after diagnosis so I am glad to hear from someone like you.

CCSVI just took a backseat. May you have a wonderful birth!
Diagnosed 1994, Self EDSS is 6.5
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Postby bigfoot14 » Thu Jan 14, 2010 3:28 pm

I could join the gripe session as well....

but I'd rather say congrats on the baby, and reassure you that you've done the right thing

My wife got pregnant after her diagnosis as well, and did fine

Now in violation of the man code, here's a little secret on raising your child.......
make the deal with your hubby that you will breast feed the baby, but that he has to go get the baby when it is crying to be fed in the middle of the night, and bring him/her to you to feed.

the long term benefit of this to you is that later (say when the child is 4-5 or in my case until all three of them were in their early teens)
and has a nightmare or doesn't feel good, they have been trained that dad gets up first to answer the call and call for him not you to fix the problem :wink:
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