Teresa - First of all, a nurse (IF in fact she actually is a real nurse) has no right to order or deny or even have an opinion about diagnostic testing unless she/he is an RN Nurse Practitioner - in which case, there are still limits on what an RNP can order without authorization from the supervising physician.

Secondly, if you have insurance, depending on what type of policy and what sorts of benefits and coverage you have, any cost to you can vary greatly. I paid not one penny, HOWEVER although my physician ordered the whole myotonia panel, my HMO at first approved it, but then retracted the authorization for the whole thing, and only approved the CLCN1, because all the doctor was looking for was Myotonia Congenita, and what type it was.

Athena tried to bully me into signing a contract agreeing to pay whatever the insurance company didn't cover - but fortunately I worked in the industry way too long, and know too much about contracts and such, so I didn't sign anything, because I knew my insurance would negotiate a rate with Athena, and it would be paid.

However, if your doctor wants the whole panel, he/she has to be able to give solid reasons why the CLCN1 isn't sufficient (if that's what he believes), or else just ask for that test, if he's sure it is MC. Since you seem not to be very sure, he could include family history, symptoms and things that make it less clear what the diagnosis may be.

Just know that, even if the insurance company says no at first, if you know what you want and need, and can document it and have more than 1 doctor on your side, very often an appeal will overturn the initial decision, and you will have the test covered. These types of decisions are never 'final' on the first or second try! You just have to have a doctor who is stubborn and insistent! (and has the right reasons)... Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Thanks Lois.
I have an appointment July 26 to go in and talk with the doctor further. Maybe he can shed some light on the matter.
Teresa

Type of Myotonia: un-known

Country: U.S.A.