Hi I have CMT type 2A and am 37 years old. We are starting a prediagnostic genetic screening ivf program. I have concerns that pregnancy may affect me and cause my condition to deteriorate further. I find that I don’t respond well to progesterone and these hormones are very high during pregnancy. I trip and fall more if I take the contraceptive pill which has progesterone in it.
I have seen research online that showed that pregnancy can cause significant and lasting weakness.
I was wondering what other people’s experiences were and if they also struggle with progesterone. Has pregnancy sped up your deterioration?
Hi Summer... I haven't checked the forum lately and something told me to check in after seeing your msg! Its' funny that you say that about progesterone...I always wondered why I was weaker and tripping more than other times!?! Sometimes it was every day! How do you know that progesterone sets this off with CMT? I am very curious...and I just had my apt with the neurologist, darn! I could have asked him.
After having my 2 boys who are now 15 and 11, my gynecologist suggested no more. As the disease progresses, it will be harder for you. My husband and I wanted two anyways, so went ahead with a vasectomy to be safe. I didn't want to be on the pill any longer, and I refused to get tubes tied! Glad that I decided to not opt for the pill, if you are saying that about progesterone!
Thanks Carm, it’s just I have noticed that when I take the pill I get weaker, my feet feel very cold and I trip more. i have seen research online how they were investigating how an antiprogessterone improved performance in mice with CMT. My neurologist denies that this is significant but I’m just listening to my body and don’t want to take any risks. Did you feel weaker during or after pregnancy? Thanks.
Thanks Carm, it's just I have noticed that when I take the pill I get weaker, my feet feel very cold and I trip more. i have seen research online how they were investigating how an antiprogessterone improved performance in mice with CMT. My neurologist denies that this is significant but I'm just listening to my body and don't want to take any risks. Did you feel weaker during or after pregnancy? Thanks.
Well, that is 11 years ago and I kind of don`t remember, I believe weaker. But I get really, really, really, weak premenstrual time and mid cycle. I mean a lot! So as you said, I listen to my body and know its something to do with the CMT but never thought it would be progesterone. I will ask my Naturopath...
Thanks Carm, how funny I also get weaker premenstrual and that’s when I tend to fall more. I really do think that hormones affect my CMT and would love there to be more research around this. Take care and thanks for responding.
I have also recently asked the same question as I am considering children. I find your effects of progesterone really interesting as I have noticed a marked deterioration in my condition for the past year more or less the same time I have been on the pill. I asked a doctor but she said there is minimal effect. Having read your post I think I will leave the pill and hopefully I improve.
Good luck so sorry I can’t help as I don’t have kids.
Thanks Sammy, it’s really fascinating and so glad I’m not just imagining the progesterone issue. I’ll attach the links to the research later today. I even found the Mirena coil, which I was assured has very low levels of progesterone, affected me. I think our systems are just so much more sensitive to medicines, hormones,alcohol, etc. Take care and hope you get some good advice re having children. Are you aware or the pgd ivf route that allows them to screen your embryos for the mutated genes prior to implantation? Sounds like a great option to reduce passing on the condition to our kids. Take care
I was diagnosed w/CMT when I was 15. I've had it for 30 years. I have 5 children (my 1st when I was 29 & my last when I was 41). Pregnancy did not affect my CMT at all. In pregnancy your immune system is weakened, so that your body won't reject the fetus. Many w/autoimmune disorders report relief from their symptoms when pregnant. I knew of a woman w/severe Rheumatoid arthritus who was pain free ONLY when pregnant! When I was diagnosed my neurologist said I had the most severe case of CMT he had seen at that young of an age. However it has progressed very slowly & the pregnancies may even have slowed the progression down..... I'm still walking & relatively pain free. And so far none of my 5 kids have it! Though even if they develope it it's not the end of the world. CMT shaped who I am & I'd like to think I've contributed a lot to this world & my kids will too. I was actually sort of advised to consider not having children by my DRs. because of the high risk of them having CMT. but I firmly believe that imperfect people have a right to live too & I was highly offended by the suggestion that no life would be better than life w/CMT! Good luck!