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Old 02-18-2013, 01:32 PM   #2
Junior Member
Join Date: Aug 2011
Location: Omaha, NE
Posts: 24
nicegrl578 HB User
Smile Re: collagen vi spectrum disorder


Welcome! I saw your posting the other day but things have been hectic around here for me. Anyways, I'm SO glad you posted on here. I also have Bethlem Myopathy, only clinically diagnosed. Your profile says you are from New York, can I ask how you got your genetic testing? Did you have to pay for it or did insurance cover it? I am having SUCH a hard time. My insurance says they cover it but one of the labs say they won't work through my insurance company because they reimburse to their client (instead of to the lab) so they said they can't risk nonpayment. They said I must pay out of pocket so (to make a long story short lol) I haven't had genetic testing done yet.

I've had contractures my whole life with borderline weak muscles. I do fairly well all in all but I can't over-do it or I'll be down for a couple days (even though I still push myself). I CAN climb stairs without a railing but after so many my legs get extremely weak and then I start having trouble. My main complaint it fatigue and muscle burning-type pain (similar to like when you go to the gym and do reps on a machine...lactic acid?).

I, too, am extremely interested in hearing other women's stories who have gotten pregnant with this.

How much does your condition impact your life? Most people can't tell I have this (except if I show them my contractures) and I can do most things just like everyone else. I would say I'm on the mild side of the spectrum.

I hope to hear back from you soon. So glad to talk to someone else with this.


Last edited by Administrator; 03-01-2013 at 11:51 AM.

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