? on hereditary peripheral neuropathy
 

It's been awhile since I have been on the forum. I am just wanting a little information on hereditary neuropathy. I just had a second nerve conduction study done, a year from my last one and it showed improvement in the sensory nerves. My f-waves had some improvement but are still prolonged. But the motor nerve conduction velocity for my peroneal nerve really did not have much change except they were able to get a reading on my right side, that they did not get on the first test. My numbers for the motor conduction velocity are 33m/sec for the right and the left peroneal, it is supposed to be 43m/sec or higher to be considered normal. The compound muscle action potenials are supposed to be 4.0 or higher and mine are .63 left and .93 on the right for the peroneal nerves. My left tibial nerve velocity improved by 1 point, the right one is normal. He was thinking maybe and automune issue was going on. Because there was not any marked progression, he is leaning toward a genetic problem, he says they are very slow in progression. I do have high arches in my feet that he refered to as pes canvus on the report. I would say my feet have a higher than normal arch, but not extremely high. I can not afford genetic testing that he is suggesting. My neuropathy has demylinating and axonal features. Can there be remylinating of the covering of nerves in hereditary neuropathy that would cause the conduction velocity to show improvement in the sensory nerves. It is just so fustrating not knowing what is causing my problems. Any help would be greatly appreciated.

Hi Lynn,

I've not heard of hereditary neuropathy. I know that PN is frustrating at any time, but finding something to halt the pain and get any measure of comfort is impossible.

Hopefully mrsD will answer your question, she is very helpful; welcome to NT by the way,

impossible? typo I think

I'll leave this to our posters who have CMT to answer this for you.
It might take a few days until they check in, etc.

Cmt
 

Hi,

I can only speak for CMT. Yes, in some types of CMT there can be remylinating of the covering of the nerves. However, I think it is rare. But they are learning more all of the time.

As you may know, CMT is a hereditary neuropathy for the most part. There can be a spontaneous mutation but that is rare. CMT is also know as Hereditary Motor Sensory Neuropathy (HMSN). There are many, many types of it and subtypes. DNA blood testing is very expensive if you have to do the whole panel of tests. CMT is often misdiagnosed even today. There is a medical alert list of drugs you should not take if you have CMT.

Some people have high arches, some have flat feet. Some CMTers legs look "normal" and others are like champagne bottles. Of course, it is a disease of the Peripheral Nervous System and so it can affect the hands, lower arms, etc. Anything outside of the Central Nervous System.

Check out PN Tips, Resources, etc. at the top of the page. You will find information concerning CMT.

I have some questions, if you know much about Charcot-Marie Tooth (CMT) disease. My neuropathy is apparently hereditary since my mother has it too, although our pain is quite different. If my PN is hereditary, does that mean that it must be CMT? If I have CMT should I do anything different than someone with just idiopathic neuropathy? I do not have any motor problems or atrophy, just pain.
Electron

Not necessarily.
 

Charcot-Marie-Tooth is the most well known set of hereditary neuropathy complexes, but it is hardly the only one. There are many, and as our sequencing of the human genome proceeds, more are being found regularly.

The Washington University database is pretty comprehensive:

http://neuromuscular.wustl.edu/time/hmsn.html

http://neuromuscular.wustl.edu/synmot.html

http://neuromuscular.wustl.edu/time/hsn.htm

Glenntaj said it well. He gave some excellent sites.

CMT is a very complex set of syndromes. There are many types of it and it is not always inherited. They have DNA blood testing for some of the types - I think around 20 or so. The testing is very expensive if you have to test for all of the types that they have testing for. Even if the testing does not show CMT you still can have it as there are many types that they cannot test for. Symptoms can vary greatly even within the same family.

There is much that they are learning about CMT and much research going on. A good neurologist who knows CMT might be in order to help you find the answer. CMT is misdiagnosed even today as something else.

There is some good coverage of CMT in the new Quest magazine. If you do not get the magazine you can find it at the mda site. The MDA has been giving grants for years for CMT research.

http://www.mdausa.org and click on Quest magazine. It is a good read. I certainly do not know everything but I have learned a lot about CMT over many years of research and how it affected my family from way back in the generations. There always seems to be something new coming up concerning it. I wish you well.