I am also posting a few of these websites. It seems like the lingo these days for Charcot Marie Tooth (CMT) has been interchangeable with Hereditary Neuropathy....They can be the same thing. Some myopathies are turning out to be neuropathies or neurogenic myopathies. The whole, entire area is in flux right now do to major discoveries with the genome.. Some of these diseases were at one time considered to be different entities and alas, are actually differing degrees and manifestations of the same disease.

I strongly encourge any one with an idiopathic or hereditary 'cause' to please check out these sites and do some research. It takes a while to understand it all, and I admit the letters and numbers of the genetic entities are confusing, but definitely worth taking a look at.

http://ajrccm.atsjournals.org/cgi/co...hort/160/1/368

http://www.ncbi.nlm.nih.gov/entrez/d....cgi?id=302800

You can click on the numbers and it will take you to the next entity. So you can access a lot of information very quickly.

Several sites indicate that 42% of Idiopathic cases are, indeed, hereditary.

Testing for hereditary causes is expensive. More and more loci are being identified every day. Having a negative result does not mean the disease is not hereditary, it simply means that the specific gene locus has not been found.

You can wait things out for a while in hopes that more symptoms emerge giving geneticists a better idea of which genes might be implicated or you can try now, if you can get your doc to order the test and your insurance to pay for it.

Athena Labs, has a program where they charge patients with no coverage at max 20% of the full cost.

If you have several family members, who have good insurance and are in no danger of losing a job or insurance if they test positive for a disease, I would encourage you to check things out.

Keep in mind, not all people can cope with the concept of hereditary disease and prefer to remain oblivious, until it hits them....and some even beyond the point where it hits them. Denial has some function for some folks.

I am quite sure that mine is hereditary. My doc feels it is hereditary, however, no one existing 'type' fully explains all my symptoms yet. I fully fit the criteria of several diseases. I do have family members showing some pretty odd symptoms at this point, so it is pretty likely hereditary. Whether or not they have found this locus or can find it is unknown.

I figure in a few years, more and more loci will be identified. I am unsure as to WHEN to undertake the actual genetic search.

The biggest caveat here is cardiac disease that comes with some of these neuropathies or myopathies or both in my case. A consult with a good cardiologist who is familiar with these neruomuscular diseases is a good idea...THAT is not easy to find. Some folks require ICD-pacemaker placement to avoid a totally preventable sudden death from a 'blip' of the neuro system. It is hard enough to find a neurologist familar with these diseases, let alone a cardiologist. We have some sudden cardiac deaths, early on. ICD-pacemaker placement runs roughly $50K. They don't do it on a whim. I have runs of nonsustaining ventricular tachycardia, that symptom is associated with some of these neuromuscular diseases. However, cardiologists are loathe to place these devices until one 'passes out.' I have yet to have my 'run' on the ambulance due to THAT reason. These cardiac occurances can happen only rarely and are very hard to catch on tape. I have some recorded, but apparently have not met the 'time limit' or duration of length that they want....however these duration criteria they set up are for folks without neruomuscular disease. It is really complex. I have biopsy proven neuropathy, biopsy proven myopathy (far from the stocking glove area--so not influenced by the usual neuropathic myopathy that occurs with any neuropathy) AND an abnormal cardiac stress test with hypotension AND recorded nonsustaining VTach. I have one quarter of my genealogy traced to the same province on almost all of the dozens of branches to the year 1470AD...and they stayed in the same province! I have found several diseaes linked to that group of folks.....I am still getting a pat on the head and a 'there, there'. I hate to say it, but you have to build a case for intervention to save your own life, if you are 'blessed' with one of these gene mutations. I have other lives to think of besides my own, and nothing is meaner than a 'mother bear' when protecting her cubs....so no, I am not releasing my jaws at this point, until I get answers from the docs.

Granted, it is cheaper for insurance, if I have a sudden cardiac arrest.

All these evals take a long, long time to get done...no doc wants to fight the system to get this done, and there are pitfalls to genetic testing and diagnosis. There are also benefits.

I suggest doing as good of a genealogy as you can. Some diseases predominate in certain ethnic groups, even down to the provinces and townships.