I was not sure whether to post this here or on a new thread, but PN awareness is a huge issue, and funny, I didn't know their color was purple, but in an email to a friend....I said, purple would be a good color....it reminds me of a synapse.
Anyway, as Glenn said, PN is secondary to other diseases, with a few exceptions.
Hereditary PN, and CIDP are what I construe, to be primary PNs, among a few others.
Hereditary PN is also called Charcot Marie Tooth Disease in many cases. Most cases of hereditary PN, can be cross indexed to CMT. CMT has quite a few gene loci identified, but they admit, they do not have them all, and Wayne State University is trying to get a data base. This testing is not cheap, however, the lab, Athena, does have a program for those for whom insurance does not cover. You may come up negative on ALL current KNOWN gene mutations and still have CMT otherwise called Hereditary PN, or you can remain an unidentifed hereditary PNer....a UHPNer.
HNPP is also included in this group of diseases, and I learned a lot from reading this weblink, so I really recommend it. HNPP can also coexist with other hereditary neuropathies or (CMTs). I never thought much about this being my problem because I have pain and I thought HNPP was painless, well, it can be painless numbness, but it can be associated with other painful conditions. I am rethinking this possibility.
The criteria for what is a CMT is, is changing and more recently axonal variants were added, AND autonomic types have been added, gene loci have not been found for some of them yet. I used to think you had to have a lot of muscle wasting, and that too, is no longer a prerequisite.
These are all primary PN.
If you have an idiopathic diagnosis, keep in mind that 42% is hereditary. Not all hereditary PN is obvious in any given family. It can go unnoticed until some one gets a really bad case.
Please read the link below.
http://www.hnpp.org/varieties.htm
Also, please visit the CMT website
http://www.charcot-marie-tooth.org/a...t/overview.php
Below is a more comprehensive explanation of the genetics of CMT, which your doc may actually be calling 'idiopathic' or hereditary PN. Charcot Marie Tooth, does suffer from the 'who named that?' kind of syndrome. Tooth, to most people means something you chew with....not the name of the guy who discovered this disease.
http://ghr.nlm.nih.gov/condition=cha...ietoothdisease
Again, there is a naming difference, some docs prefer to refer to the disease as a hereditary neuropathy, especially if your disease does not fit into the known gene loci for CMT. However, that does not mean, that you can not be cross diagnosed as CMT. CMT has not been exclusive of hereditary neuropathy, because they understand that many doctors do not run across the disease and may fail to diagnose it.
PN, needs to be described as primary. The current names for primary are 'idiopathic' or else CIDP or one of the other known mono or polyneuroapthies that are identifiable. Those 25 to 30% of cases called Idiopathic, 42 % could be CMTs. To put that statistic another way, 12 to 15% of PN is Hereditary, that is more than one in ten cases.
Unless you have access to a neurologist who is really very up to date, and knowledgeable about hereditary neuropathy or CMT, you will be left with Idiopathic Neuropathy.
Keep in mind, if you do not fit into the current categories of CMT, you can still have a Hereditary Neuropathy, and eventually it may or may not become part of the CMT family.
ALL PNs, whether primary or secondary, and that is how it should be described, have commonalities, but as Glenn said, secondary PNs have the disease which causes them take center stage, and with the primary PNs, most don't make it to that final diagnosis of Hereditary PN. That still leaves more than half of idiopathic cases, with no known cause.
I have seen a CIDP website, a HNP website and the CMT website.
Anything that can be done to raise awareness for PN is great....if I ever get myself to a public athletic event as a participant again, I will gladly wear 'our' colors. I am not famous, I am not Lance Armstrong, but I would be proud to wear our colors, provided you guys are not too embarrassed if I pass out on the side of the road. We can always say, "I tried".
I also think bumper stickers or those clear stickers you can put on your cars are great.....I would love a purple rubber bracelet like Lance's yellow ones.