Hello,
My name is Justin, I'm 20 and have lived with Myotonia congenita all my life.
I've just recently found out exactly what my disorder was, as both my parents were young when i was born they were never properly educated with my problems in which has left me in the dark about it.
Recently I've been having quit a bit of pain when trying to relax my muscles, which has sparked me to start researching MC and lead me here.
I've worked for everything I have since the age of 15 with that being said I can't afford to be missing work and paying for Dr. visits. my question is if anyone has the knowledge to know if I would be eligible for some kinda of help in getting medical insurance, or something that would allow me to be bale to at lest get a check up?
Thank you for your time,
sincerely
-Justin B.-

Type of Myotonia: Myotonia congenita

Country: United States

Justin:

If you mean a checkup for the MC, you might want to contact the MDA. They occasionally provide services free of charge or at a reduced rate for those with certain neuromuscular disorders.

There are actually a few different disorders that cause myotonia and sometimes they can be difficult to tell apart without a genetic test. The testing is useful because there are slightly different treatment/management options for the different disorders, and knowing exactly what you have can help you find new information relevant to that disorder or mutation specifically. The MDA might be able to help you obtain genetic testing, or if you have the money you could pay out of pocket. They can do one test at a time or test for all of them myotonia causing disorders together, depending.

In the past, there was a downside to having the genetic testing, and that is the fact that it could have made it difficult to get affordable insurance. I'm not sure if that's the case anymore due to changes in insurance regulations.

The medications used to treat MC and similar disorders usually just work at increasing muscle relaxation time and reducing stiffness. The most effective medication used to treat MC is Mexiletine, also called Mexitil. It can be difficult to obtain and a person should have a cardiac workup before hand, because it's an older heart medication and can cause life threatening side effects. For myotonia caused by sodium channel mutations, Diamox (acetazolamide) often tends to work a little better. There are a few other medications as well that some people have had some success with.

The medication might reduce the pain depending on what's causing it, but a lot of people with MC don't take medication, and either just tough it out or manage symptoms with lifestyle.

Some of the most effective ways to manage MC with lifestyle, is to learn how to stop pushing through the myotonia and working against your muscles, and maintaining a moderate level of exercise on a regular basis, like walking.

People with sodium channel myotonias find limiting their potassium intake helps with the delayed relaxation. Some people with chloride channel myotonias (myotonia congenita) feel this helps as well. Personally I'm the opposite in that I feel that potassium in my diet helps reduce the painful cramping I get in some muscles. But I don't have a sodium channel myotonia. I have Becker MC, which is a chloride channel myotonia.

Keeping warm in cold weather also helps, and limiting stress. Stress can cause the release of hormones such as adrenaline, which cause the body to release a neurotransmitter called acetylcholine. Acetylcholine causes muscles to contract, and this is why stress and fear can make myotonia much worse.

Type of Myotonia: Becker

Country: USA

Justin, as Jenna mentioned, your local Muscular Dystrophy Association office would be the best way to get your care covered. If you have a diagnosis from a doctor, you can just have it sent to them and they will get you set up as a patient. They cover whatever insurance doesn't pay, so if you don't have any insurance, you shouldn't have any charges.

If you go to MDAUSA.org and type in your zip code in the green search bar on the right, it will list your nearest clinic (usually affiliated with a university medical center).

Jan

Type of Myotonia: Thomsen's

Country: USA