Re. Pregnancy and risks of further degeneration.

[Happybeedaisy]

Hi I have CMT and have read that pregnancy can exacerbate my condition. I find I fall more easily at times of my menstrual cycle when progesterone levels are the highest which worries me about pregnancy, during which progesterone levels are high. I'm unable to take the contraceptive pill as it makes my limbs cold and achey from poor circulation. Anyone else have these difficulties? Has pregnancy affected your condition? How did you respond to ivf hormones if you did preimplantation genetic testing? Thanks for your help!!

[lordie]

Well when i have my period it is the opposite i dont take birth control pills cause it is against my religious belief.

But my family member had children some had symptoms some didnt of their cmt

The funny thing is not all the kids they had had cmt

I find that odd

[Happybeedaisy in reply to lordie]

Thanks Lordie and Gibbo090,

How funny how each of us have different experiences of our 'cmt'. Gibbo congrats on your pregnancy. Very exciting. I have never been offered surgery by my neurologist despite requesting it to correct my tight Achilles' tendons, etc. I would love to chat privately and hear where you live and if in UK which surgeon, etc did your operations? Has your neurologist said much about your pregnancy and delivery options? I hope you both have a great weekend!! Gxx

[CMTUnitedKindom Partner in reply to lordie]

It's not odd at all. For most types of cmt, there is a 50/50 risk that a child will inherit the condition from the affected parent. So it's the flip of the coin scenario. And everyone is affected differently,

[Gibbo090]

Im currently 27weeks pregnant with my first child. I am finding it a little difficult with more leg cramps and pain. But ive purchased flight socks(maternity socks) which has helped alot. With the falling over ive took care with watching how im walking and sensible footwear is a must i use trainers. Ive always delt with my cmt as a blocking it out and having a normal life the better. Ive had several operations to my feet. Sometimes uve got to look past it and go with it so you can live a normal life as possible

[CMTUnitedKindom Partner in reply to Gibbo090]

Exactly, NEVER let CMT rule you, it's just part of your life, not all of it!

Hope the birth went well!

Karen

[AJC13]

Hi

I have had 3 children and my walking actually improved during pregnancy which we think is because my centre of gravity was lower

[AJC13]

I have had 3 children none of which have CMT .

[CMTUnitedKindom Partner]

I'm afraid I don't know anything about PGD/IVF hormones, but I took the pill for years before I had my kids and had no problems at all.

Pregnancy doesn't worsen CMT - that's a myth! It can feel like it does, because as you get heavier, that does have an impact on your mobility - but that's the same for everyone

As far as progesterone worsening the condition, I've never read any evidence of that, however there is some research in Germany using a progesterone suppressor in rats which does seem to help - but it may be very type-specific, I can't remember the details. Whatever it was they were using, the drug is toxic in people anyhow, so of no use to us yet!

It just sounds like you need to go back to your GP and try a different type of contraceptive, until you find one that doesn't affect you so badly.

Karen