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Thomsen's - The Lamb That Becomes a Lion - Anyone else had this?

My experience with Thomsen's Myotonia Congenita has been like most others - until now. I'm 55 years old and the Mexiletine is no longer effective at its highest dose allowed. I get SEVERE muscle contraction now that DOES NOT remit in the usual one or two minutes. I've had blood tests and all. Well, surprise, surprise its the Myotonia. The standard paragraph on Myotonia Congenita that has been endlessly recirculated for years around every document in the healthcare community doesn't mention THIS. It pulled so hard last weekend that it dislocated my bad shoulder and I had to go to the ER. They gave me a huge dose of narcotic IM and after a half hour it let go.

I see the muscle specialist/neurologist at the Kansas University Medical Center this week. She tried Tegretol which helped with the pain but no luck on the muscle contraction.

The other problem with MC when it goes berserk is that you are absolutely exhausted. The whole muscle electrical storm thing really does a number on your energy level. I don't care what the literature might say. Let some of these well meaning physicians live ONE DAY in my body.

I am a computer programmer and also restore and play Victorian reed organs and other things. I can only play a couple of songs now and my hand muscles hurt so bad I'm in tears. Typing is even becoming difficult. My restoration activities are almost halted because I'm so tired and I'm very discouraged about the whole thing. I just don't know what my future holds and I know that SSN disability is a nightmare. I also have insulin dependent diabetes and Ulcerative Colitis. If I do have to go the disability route, at least there is a little more behind me.


Has anyone else had their MC do this? Stuart

Type of Myotonia: Thomsen's

Country: USA

Re: Thomsen's - The Lamb That Becomes a Lion - Anyone else had this?

Stuart,

When MC suddenly gets much worse I always suspect statin drugs or some other medication. I've been trying to get warnings on the labels because doctors just aren't aware.

Statin drugs for cholesterol can cause permanent damage to the chloride ion channel. Even a normal person can experience severe myotonia.

This is from a recent medical journal article on statins:

"Statins and fibrates can produce mild to life-threatening skeletal muscle damage. Resting chloride channel conductance (gCl), carried by the ClC-1 channel, is reduced in muscles of rats chronically treated with fluvastatin, atorvastatin or fenofibrate, along with increased resting cytosolic calcium in statin-treated rats. A high gCl, controlled by the Ca2+-dependent protein kinase C (PKC), maintains sarcolemma electrical stability and its reduction alters muscle function."

I think that until we start a class action lawsuit nothing is going to change. You might also want to ask your doctor about testing you for mitochondrial disease. In particular you would want to look for a carnitine deficiency.

If you are taking insulin, that will also worsen myotonia. Of course you can't do without it if you have insulin-dependent diabetes, but the more you can do to reduce insulin resistance, the less insulin you will have to take and that should help somewhat with the stiffness. The best non-medical treatment for that is fish oil and niacin to help reduce triglycerides. A dietician may be able to help you with that.

It's hard to know if the acute myotonia you're experiencing will ever improve. I think it depends on how much damage the statins did. I would suggest talking with a personal injury attorney.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Thomsen's - The Lamb That Becomes a Lion - Anyone else had this?

Thanks so much for the information. I was on Baychol years ago and that reactivated my MC permanently. I have avoided all Statin drugs since, of course. I was not aware of the insulin-Myotonia link. That is VERY helpful information. Thanks! SETuart

Type of Myotonia: Thomsens

Country: USA