It does open up a whole new can of worms....I suppose if the methods are available to determine who gets what treatment, the insurers will make a case to demand it....such as IVIG for CIDP, or CMT for the braces or the lucky type that might be helped by the progesterone antagonist.

This is one reason I think we are seeing so many, 'soft' diagnoses, such as idiopathic and myalgia....the treatment is the same, anticonvulsants, antidepressants etc. Fairly cheap, and for symptoms for many, effective. Once it gets more specific, things get more expensive in terms of intervention, unless of course, it is just braces, orthotics (not cheap but not the same cost as IVIG or cutting edge drugs).

I have to say, that I can go thru the testing. The fee cap is not unreasonable and I could pay it, not that it won't hurt the budget, it will. On the other hand, all of the CMTs are not yet recognized and I suspect, as my doc said, there will be hundreds.....so the question is, when to do it. I feel they need to narrow things down more for me to undertake the cause.

I would not encourage my kids to do it, if I have it, as my doc suspects, and we isolate which type it is.

Once 'an' individual is diagnosed in the family, you likely know what it is if some one else develops it. A few of the CMTs are more brutal, and then I imagine preconception counseling is warranted.

The concern, which no longer affects me is job discrimination and health insurance denial. Once a child is diagnosed with this, as a minor, or a person as a young adult, it will follow this person for life, and potentially the siblings, and offspring, and I am not that confident in our government to protect us from job discrimination.

It is interesting that as many as 42% of idiopathics could be genetic. They don't tell you that at the clinics. That is both good and bad, I guess.

I would bet that as technology improves, genetic testing will be required before more expensive therapies are attempted on idiopathics. After all, years of IVIG, is far more expensive then the testing for CMT.

It will be interesting to see what evolves.

And you are right, the proathlete or genius will have more resources at their disposal. Although, it appears that this testing is becoming more readily available. As an older adult, if I have it, the information is unlikely to find its way into my grown children's medical records. I am in the perfect situation to be tested, with the least negative impact on others....if I were younger, I would think twice.

If treatments such as progesterone antagonists are ultimately found to alter the course of some CMTs, then I would think that more people would want to know if they had that kind of CMT.

I just find it interesting that CMT so seldom comes up in the context of idiopathic.

Idiopathic, up to recently, has meant 'unknown' to me, not possibly genetic. To me the words, 'idiopathic OR genetic' should be offered up as explanation, not just 'idiopathic'. Then the pros and cons of pursuing hereditary causes need to be discussed with the patient.

I am sure a lot of people will opt to remain idiopathic, for a lot of good reasons, at least for the near future.

I am with you on the single payer system, and I worked in the system.