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Re: finally a name to it

That's great! It's a life-changing medication for a lot of people.

I hope you get the approval. Tell them it's very important to document the exact type because of the potential of death from anesthesia reactions. My doctors did not take it seriously until I had the DNA confirmation.

Jan

Type of Myotonia: Thomsen's

Country: IS

Re: finally a name to it

Life changing for sure. My son can feel a difference when getting up after sitting or laying, but hopes it will eventually do more. I told him to be patient. He just started this medicine and I am sure his doctor wants to see how his body accepts it before any change in dosage. It is good feeling that we are finally on the right track.

Next doctor visit May 2nd.

Thanks so much for the interaction.

Type of Myotonia: Thomsen

Country: USA

Re: finally a name to it

Finally getting somewhere with the genetic testing. Looks like Fullerton Genetics in Asheville, N.C. is a participating provider with our insurance. Thanks for mentioning the available labs in the US. I was looking at $5800 with Athena Diagnostics. The insurance would have paid 80% of an allowance ( they claimed not to know allowance amount until billed by lab), leaving me to pay anything over their allowance, plus the remaining 20% and a $ 500 deductible.

I was first informed by my insurance that the only genetic lab listed as a participating provider was Myriad Genetics, Salt Lake City Utah and they do not do myotonia profiles. It wasnt until I mentioned Fullerton, that they found it to be a participating provider.

The call taker at Fullerton was great. She double checked to make sure they would be able to bill a NY resident and supplied me with the CPT codes to give to my son's doctor for prior approval.

Type of Myotonia: Thomsen

Country: USA

Re: finally a name to it

I edited my initial reply because I missed your paragraph about the EMG and Mexitil. It's best to start with a small dose and work up to the full dose on the Mexitil. Be sure to read the product insert so you'll be able to recognize potential side effects.

Jan

Type of Myotonia: Thomsen's

Country: US