I finally have an answer to the mystery of my muscle stiffness.
Yesterday, my neurologist diagnosed me with myotonia congenita, an inherited neuromuscular disorder. From his initial examination and analysis of my symptoms, he believes that I have Becker's Disease, which is one of two manifestations of myotonia congenita. This form of the disease sets in later in childhood or adolescence and tends to cause more pronounced symptoms. It is common for symptoms to be exaggerated during pregnancy, which is what I am experiencing. Cold, stress, and high-potassium foods can also cause symptoms to worsen.
Mostly, I feel good about finally having an explanation for what is going on. But I also feel a little freaked out about it. I'm anxious to talk to my OB and our perinatologist about how this may affect the rest of my pregnancy and delivery. While this condition has been an annoyance for the past 10 plus years, these days, it feels pretty limiting. And I worry that it won't resolve itself after the pregnancy and that it may impact my ability to care for my daughter. I've done a little bit of research and it seems that there can also be some complications during delivery. But I'm trying not to get too far ahead of myself and to simply focus on how it is affecting me right now.
I think part of my anxiety about it is that until recently, I really thought that it was due to something in my diet or exercise routine. I always thought that if I figured out what was causing it, I could resolve the problem. So, now it feels a little more scary to me. But hopefully, things will go back to my pre-pregnancy state once Bumble is here. One day at a time, right?
But Bumble seems to be doing well. In fact, she's bumping around in my belly right now. Which is quite possibly the most amazing thing I've ever experienced.
I agree you should take it one day at a time. I'm also a big advocate of looking into holistic methods to reduce your symptoms. It takes a bit of research, but I believe it's worth it. Hang in there.
Posted by: Heather | January 20, 2008 at 10:32 PM
I hope the condition is manageable.
Feeling Bumble bounce around must be amazing.
Posted by: SaraS-P | January 21, 2008 at 03:58 PM
Think my comment was eaten.
I hope the condition is manageable, and feeling the Bumble bounce around must be amazing.
Posted by: SaraS-P | January 21, 2008 at 04:00 PM
one day at a time s definitely a good idea at this point.
was your neurologist able to talk with you about the impact on pregnancy? hopefully it will be minimal and manageable.
take good care of yourself, Nikole.
xo
Posted by: megan | January 21, 2008 at 04:52 PM
Hi Nikole
I just wanted to let you know I'm thinking of you. I'm glad to read that things are going well and hope that this condition will be easily manageable. Sending you and little Bumble lots of good vibes.
Posted by: Holly | January 22, 2008 at 03:28 PM
Nikole,
Have you thought about getting a second opinion? Always a good rule of thumb when a simple blood test might not show that you have it.
Remember that during pregnancy and also in the post partum - symptoms of anything can be extremely upset. My arthritis after H was born was almost debilitating, but it eventually went away.
Hang in there, you have a lot of support, and will get through any challenges swimmingly! --Keep on, sweet Bumble.
Posted by: Nancy | January 24, 2008 at 07:50 AM
Yep, one day at a time, I think that's best. And continue to enjoy just being pregnant, and being amazed. Sounds lovely.
Posted by: Vivien | January 24, 2008 at 11:09 AM