Trembling

[Mummytothree]

Hi, I have cmt 2 and was diagnosed 19 years ago. In the past 2 years they are nearly certain that they have found the gene responsible, which is great news! In the last 6 months (along with a lot of other issues!) I’ve been experiencing trembling in the core of my body when I wake in the morning. Just wondering if anyone else has/is experiencing the same. Would love to hear your replies.

[Enzowilldoit]

Hello..i experience this but it is at the end of my day...in my mind i kind of related it to sitting in my electric wheelchair all day..like electricity still going through me in waves of current in my core after i get on my bed...like being on a boat, then standing on land. But i CAN also experience it at times while in the chair as well. I have never considered it being a component of my CMT. But i would not be surprised..like you, i have had it for years and have multiple symptoms...i am a mummy to 3 as well, all adults now, one of whom also has CMT😕...Best to you..☺️

[Mummytothree in reply to Enzowilldoit]

Thank you for your reply, lovely to hear from you. My trembling sounds just like you are experiencing, I thought initially that it was a small earthquake 😂 and then realised that it was me!! It only happens when I wake up in the morning. My children are also grown up and left home which leaves just me and my husband. My children are all carriers, but as they’ve found that it is a recessive gene that I have, they will not be affected. My sister has it. Really nice to speak to someone who is experiencing the same things ( of course along with everything else 🙄!) we must keep in touch. Best wishes, Melanie. X

[recChicago in reply to Mummytothree]

Thank you for passing along the info on the gene ! I will pass along to my Dr at University of Iowa. This is a clinic dedicated to research and diagnosis of CMT. I will be surprised if they are not aware. They diagnosed me with CMT2 three years ago.

Regarding trembling: I, too wake up with trembling in my core, but truly believe that it is caused by anxiety in my case. My symptoms have progressed rapidly after many years of very mild tingling in my toes and slowness in firing of nerves in my legs. Having a progressive illness that changes consistently for the worse and anticipating growing disability is nerve wracking. And, I believe that subconsciously I am anxious and this is why I tremble prior to becoming fully conscious upon awakening.

Of course, this is 100% self diagnosis, but I feel better chalking it up to anxiety! And, it is inconsistent. When I am feeling positive and more accepting of my situation I wake up totally calm with a “quiet” feeling in my body. Those are the great days!

I hope that you can dismiss all concern regarding trembling. We CMT2 patients certainly have enough to deal with as the disease progresses.

[Mummytothree in reply to recChicago]

Yes you’re probably right, I am very anxious and spend a lot of time worrying about very small things. These symptoms have only become apparent over the last 6 months and I wonder why, as I’ve had cmt for many years. I think we have to be as positive as possible and focus on what we can do rather than the negatives. It’s nice to be able to share experiences and feelings with other people suffering from the same disease.

[rec60661 in reply to Mummytothree]

Yes! Nerve wracking to have a progressive disease, but with managing a household and taking care of three children you likely are dealing with stress. Hopefully you have someone to talk to and "real" support with all that you are facing. I wish you the best!