Small Nerve Fiber Involvement in CMT1A

Hi all,

If you're like me, when you talk to a doctor about your CMT they often don't know a whole lot about it other than it makes you have thin ankles and your feet are misshapen. Of course, we CMTers know that CMT affects a lot more than that! We know it because we experience it! In any case, unless you're talking to a CMT specialist, it's quite likely that a doctor's knowledge of CMT is not only limited, but old. So, it becomes incumbent on each of us to be our own best advocates. This can sometimes mean showing doctors the latest research about CMT in an effort to bring them up to speed.

I've long had issues with other parts of my body besides my hands and feet. I've dealt with strange sensations like being too hot or cold; sweating when I shouldn't or not when I should; having burning, tingling, shooting, or electrical pain in feet, lower legs, hands, and forearms; getting light headed when standing, have issues with not feeling hungry or feeling too hungry and nauseated; having irritable bowel (IBS) type problems, and having issues with urinating either too much or not enough. I've always had a sneaking suspicion these were related to CMT but I couldn't make sense of it, nor could I back it up in any way. Doctors continually admonished me not to lump all my problems into "the CMT" bucket but, at the same time, couldn't give any explanation for my problems. A light came on in my head though, when I stumbled upon this study recently...

The gist of this is: the above mentioned problems are ones related to neuropathy of small nerve fibers. These nerves innervate the enteric (digestive) and autonomic (bodily functions: digestion, respiratory and heart rates, urination, etc...) nervous systems. These were not commonly thought of as being affected by CMT but the study linked above shows that they indeed are!

The conclusion of the study is:

We demonstrated through [...] testing that small somatic and autonomic fibers are abnormal and cause symptoms in patients with CMT1A.

So, if you have CMT1A and face similar problems as I do, it is quite likely these nerves are affected in you as well. It would benefit you to make your doctor aware of the study and its implications. Just knowing might make you feel a little better (I hate health mysteries) and maybe help your doctor find palliative solutions that work for you.

Wow. Both my mother and my 25 year old son have stomach problems. They underwent SO much testing. Any were given a blanket diagnosis of IBS. I can’t wait to to tell them. It’s harder when you think that you have a long list of problems… easier if you know that there is just one thing. You feel better emotionally.

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Kathy Jo- so true. After a while we begin to think we are crazy. I am so thankful for this sight. I have a ‘list’ of diagnosis, with a collection of strange symptoms which not one of my specialist cares to acknowledge let alone figure out. It is so frustrating. CMT is the first thing that explains it ‘all’ . My issues definatly affect sensation and balance…but also affect my cognative and visual (of late). The greatest impact has been on my autonomic system.- allergies, pain, drying of mucous membranes, ibs, dry hair, dry skin/callouses, breathing difficulties, memory, extreme fatigue, central apnea, profuse sweating without cause, pain, loss of complex problem solving, anxiety, gerd, loss of mental concentration/focus. oh did I mention pain?

So the doc says, “why are you so upset? I told you it’s not cancer… it won’t kill you- you should be HAPPY!” Really, doc, really?