As you may know, Dr. Dirk Deleu became a board certified neurologist in 1988. Nowhere do I see that he is an expert on CMT.

http://www.neuroweb.us/page2.html


The information concerning CMT changes regularly and what is posted is not that recent.

I don't think the list, or the site, was/is intended to be a comprehensive authority on CMT or any other condition. A list of the types of neuropathy and their differences is what was requested.

If you have exception with the material, there is a contact link at the bottom of the home page. Please direct objections & corrections there. Thanks.

Doc

This is another site... but it is old too. 1998.

One can see that the drug list is lacking many drugs we now
know cause peripheral neuropathies.

But the page illustrates the complexity of the subject, how large it is, etc. It is written a bit more easily too.
http://www.aafp.org/afp/1998/0215/p755.html

There are many medical texts, with old information in them. Rose from here used to remark that doctor's using those old outdated texts, were the main reason so many with low B12 were suffering, and ignored by their own doctors.

Even texts with newer copyrights, can contain old articles that were never updated. Makes one feel really secure, right? NOT.

I think one of the reasons some of us are so sensitive to erroneous information is from meeting up with doctors who say things like "its not supposed to be painful" or "it's not supposed to get worse this quickly". You get the feeling their information is outdated, or perhaps was never very good. Even neurologists. I have small and large fiber neuropathies, pretty far gone, and my symptoms are perfectly consistent with my test results. I have pain and am losing the ability to walk. My neurologist was, however, disturbed by my symptoms and the rate of progression, so much so that she refused to see me again. Experiences like this make it very important that the information our primary care doctors find when they look up these relatively rare conditions be as accurate as possible.

Please don't take it so personally Doc! I have the greatest respect for your helpfulness, and I certainly did not intend any offense!

It can't be stressed enough that you need an expert neurologist who knows CMT. I have had the pleasure of listening and conversing with some of these experts at my support group meetings. Other neurologists and GP's do not have the slightest idea. That is why I am so adamant that the correct information (as much as it can be) be out there for people who read this and the reputable links concerning it. There are so very very many types of CMT that they have found and they are still continuing to find new types of it.

And yes, there are many many types of PN as well.

Knowledge is power but it has to be up to date as much as possible and reputable.

I also know that you are only trying to help Doc.

unbelievable. she should do herself and everyone else a favor and find a new line of work.

Actually she is extremely well qualified, thorough, and competent. She exhausted all avenues and sent me to Johns Hopkins for a second opinion. But she was distressed by not being able to DO something. CMT is progressive, incurable and untreatable, but it isn't life threatening like ALS or MS, as she rather forcibly reminded me, so she sent me on my way. I was upset because I found her consoling. Obviously she couldn't say the same for me!

Kitt, I don't quite see the need for a CMT specialist once a diagnosis is obtained since the only treatment is palliative. Pain management is generally handled by a PCP anyway since they see you regularly. Most CMT specialists in this area are pediatric.

Sorry to but it seems apropos...
http://distractible.org/?p=3912

I got dumped by a doctor once who cited the reason in a letter, I presume because he couldn't/didn't want to face me, his reason being something like "our relationship is no longer therapeutic". I spoze it could have been some arcane code meaning something else, but it turned out for the better. The doctors I've had since have, for the most part, been aces (or I've found others).

Doc