Hi Joey -
Do you already have health insurance? This is an important question because once you are already insured, it is very unlikely that your carrier would try to drop you because of MC, just as they would not drop you because of diabetes, arthritis, high blood pressure or any other chronic condition. Depending on the type of insurance, and where you live, it is not even legal to do so. Also, if you are insured and leave your company, you would get a letter of insurability from your insurance company, which means that another insurance company could not turn yo down. Additionally, in the next few years, as the new health reform laws are implemented, it will become illegal for insurance companies to deny coverage or gouge customers. And, as Jan has said, MC's coding (or categorization for billing and treatment purposes) has been updated, and now reflects the condition more accurately. The government (Social Security/Medicare, etc) does not accept MC as a disabling diagnosis, so the insurance companies will not be allowed to. lois

Type of Myotonia: MC- Becker's type

Country: USA

When I last applied for health insurance, I didn't know exactly which of the myotonic disorders I had, so I put it as "muscle cramping", I stated I did not take medication for it and managed it with lifestyle, and that the results were good.

They never raised an issue about it. However they did raise a massive issue over another condition I have which required that I track down a doctor I saw once nearly 10 years ago who, needless to say didn't remember me, but the insurance company got their "She isn't expensive" letter and was happy with it.

I did not go through them for the genetic testing as they couldn't seem to be able to give me a clear answer on whether or not they would cover it and indicated they would make it as complicated and drawn out as legally possible.

Myotonic Muscular Dystrophy is the expensive, uninsurable diagosis. If you suspect MC, just get the test that sequences the CLCN1 gene and if that comes back negative, then the SCN4A gene.

Type of Myotonia: Becker

Country: USA

We just had to apply for family insurance after being insured with the same company for 30+ years due to a job loss and no Cobra when a company closes shop. Yes, Cobra does not exist for an employee if the company folds...it only exist if you are let go and the company still exists. That is the one thing people don't understand. Small business people can not afford the upcoming insurance laws forced on them and they are closing up. When I say small business I am talking about 100+ employees. We were not denied but our MC family member was put at a high risk and to insure a family of 4 it is going to be $1,200.00 a month. That is with a $7,500.00 deductible. No prescription drugs. So basically, what we are paying for is if something terrible happens to one of us. Unemployment does not even cover our health insurance. And we have been hard working people. This country is a mess because of sue happy Americans for way too many years. And, Freebies who have enjoyed the "good life" while hard working people paid for them. I have worked since I am 14..my husband also. So my question is? Why should I be happy to pay $1,200.00 a month when illegals enjoy our system for free? It seems that being illegal gets you better health care then what other's have to pay out. I do not know the answer, but I am an American and I am tired of working hard and paying for others to have better then me. I thought of moving to Norway, China, Austrailia, Mexico but they won't give an American their health insurance. Only America gives it out for free to those who don't pay into the system...and love that us Americans cover the cost. Why do you think we have so many illegals in our country? They get the best medical coverage and we all pay for it.

I didn't realize Cobra wasn't available when companies shut down. That's an outrageous amount...I think you should appeal the high risk rating.

I'll try to go through my old emails this week and see if I can find the letters from doctors that I used to get the CDC to change the coding. They may still be classifying MC with myotonic dystrophy...the CDC told me it could take a few years for it to make it down through the coding software but that in the meantime we should appeal denials or high risk classifications. You can at least give them links to the websites and articles that state MC is not progressive and not life-threatening.

Jan

Type of Myotonia: Thomsen's

Country: US

I found several emails that I sent during the period I was corresponding with the CDC. I don't have your email address any more, but if you'll contact me privately I'll forward on those messages for your insurance underwriter to review.

Jan

Type of Myotonia: Thomsen's

Country: US

Have you looked into the law that takes effect September 23 where people with pre-existing conditions are able to enter the state pool? It is part of the new healthcare law (Affordable Care Act). I do not think you will qualify since you can get some coverage but you should look into it.

http://www.healthcare.gov/law/provisions/preexisting/index.html

This link is not intended to start a political discussion. I did a google search and the link came up.

I will keep your family in my thoughts as you go through this difficult time looking for work.

Type of Myotonia: Thomsen