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 You get the feeling their information is outdated, or perhaps was never very good.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.

Suzanne C., actually CMT can be life threatening if there is phrenic nerve involvement. This site has a little on it. There are other reputable sites as well concerning the phrenic nerve and CMT.

http://www.ncbi.nlm.nih.gov/pubmed/16294569

Once you have a definite diagnosis of CMT you "probably" do not need to see an expert neurologist who knows CMT. Suffice to say that they know what CMT is. They see others who have CMT. They have kept up on the types of CMT. They know what meds to prescribe if needed and they know what meds you should not be taking. This includes pain killers. They can prescribe AFO's, orthotics, etc. and really know what you need. Casted AFO's "must" fit perfectly. A CMTer has different needs than other people who require AFO's.

PCP's have had like 10 minutes on the subject of CMT if they have heard of it at all. They can and do prescribe medications. But do they know what medications a CMTer should not take. They too can and do prescribe AFO's, orthotics, etc. But then it is pretty well left up to the orthotist to decide what kind of AFO you need. And there are many, many kinds and types of AFO's. It is nice if the orthotist has seen others who have CMT (even though we are all different). He/she then has a good idea of what you need.

There is no expert neurologist who knows CMT in my area either. I would have to travel over 300 miles round trip in order to see one and that is not doable now.

A good idea is to learn everything from reputable sources that you can and to keep a copy of the medication list. Give one to your PCP as well. This list is very important.

http://www.cmtausa.org/index.php?opt...d=68&Itemid=42

someone who tells you that they refuse to see you again because of your symptoms and rate of progression is not very professional, i dont care how qualified and thorough they are. its not in the patients best interest and well being to be ditched because the doctor lets it be known they are disturbed by how sick they are. A calm, rational discussion about limits to their knowledge and ability in a certain area of neurology and the need for you to be seen by someone who is knowledgable and competant with that area would be much more productive and professional.

This is why--
 

--the Internet has been such a wonderful tool for us--and would be for doctors, if more of them would use it. Sites can be updated as new information becomes evident (and places like Neurotalk are actually quite helpful in this regard).

I personally prefer to consult some of the large databases that I know are regularly updated. One of the best of these as regards neuromuscular conditions is the Washington University at St. Louis site, which is updated constantly, and even has a section where one can see these updates, complete with references:

http://neuromuscular.wustl.edu/

I've personally had experience with changes here--the celiac section, for example, has been significantly updated and revised over the last ten years as more information about neurological symptoms of the condition has become apparent (and I do believe some of the work JCC had done accumulating information for the Gluten File, as well as work done by the neurology researchers at Cornell-Weill, whom I know well, contributed to this).

The orthopedist I saw in Md. for my knees initially told me I had avascular necrosis, which means the joint is being starved of blood, and the bones will die. Another time he said that I was going to have to get a knee replacement because of arthritis symptoms because there was nothing he could do. Then when I got back from the Mayo Clinic in Jacksonville, FL, he asked me why I went down there, like he was insulted or something, and I told him to his face that he gave me two diagnoses that were not only the worst possible, but negligent. Turns out I had a baker's cyst behind my knee that could be treated with an occasional cortisone shot, and there was no structural damage in it, and as long as I took a diuretic from time to time, the swelling my neuropathy generated could be controlled. What a jerk.

I had a problem with my right knee years ago. The Ortho thought it had a tumor. He told me my left would "go" within 5 yrs. (based on the preliminary Xrays.)

After the MRI which showed no tumor or cyst and said I have "fair" cartilage, he gave me an injection of steroid + marcaine. That worked for a little while.
But what REALLY worked was using SAMe....I used it for a decade and stopped for a short time, which flaired the knee again, so I am back on it.

Suffice it to say, my left has never acted up at all, and it is over 10 yrs now! (knock on wood)

This ortho wanted to do a knee replacement, and that is all he talked about. I won't be going back to HIM either!

The SAMe works well for me and my osteoarthritis.

Sorry to :deadhorsebeat: 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