prognosis

[pamsalley]

I was diagnosed with cmt 1a before the birth of my daughter 10 years ago.  I was asymptomatic until about a year ago.  Now I have the first stages of foot drop, pain and tingling in my feet every night and pain in my forearms when I write or type.  I am 42 years old and I fear for my future.  Does anyone have experience with late onset cmt?  I'm scared of the future.

Thanks.

[CoastalNurse]

Experiencing the onset of symptoms of CMT now must be frightening - made more so by not having a clear picture of what to expect and how the disease will progress for you. As you mentioned you received your diagnosis sometime ago, I'm assuming you already have a lot of knowledge about CMT - it's management and prognosis. CMT1 does not shorten a person's lifespan but does impact how they live and manage their lives.

What is key for many people living with CMT is a connection to a solid care team to help navigate the waters people find themselves in - especially once symptoms become more apparent. Regular evaluation by a team comprising physiatrists, neurologists, and physical and occupational therapists is recommended. Becoming informed about CMT and what things should typically be avoided (i.e. some medications are not recommended for people living with CMTas they could worsen their CMT). The attached link has a lot of useful information which, if you haven't already read it, might be helpful for you.

http://www.ncbi.nlm.nih.gov/books/NBK1205/

You likely have already connected with the Charcot-Marie-Tooth Association, but if not this is a great place to connect with others living with CMT through forum discussions and events.

http://www.charcot-marie-tooth.org/index.php

I hope this is helpful. Perhaps others will be able to offer more ideas and support as well.