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Update - Message from DR to alleviate the symptom myotonia.

Yesterday morning I was slicing butternut squash using a mandoleen (sp?) for yummy hashbrowns - IF YOU HAVE A MANDOLEEN, THROW IT AWAY IMMEDIATELY!
Trying to slice a whole butternut squash is like trying to slice a rock, so I put a LOT of muscle into it! Well, being that I don't have a lot of practice with a mandoleen, at one point my pinky went through with it, and I very nearly sliced off the entire tip of it - including the nail! UGH!
Thankfully, i even sliced some of the nerves so it didn't hurt as bad as it could have.
The doctor at the urgent care clinic was happy to inform me that she could stitch it up fine. I got a tetnus (sp?) shot, and the stitching was soon underway!

During the stitching of my finger, although it was 100% numbed, I was thoroughly uncomfortable getting surgery on my pinky (I'm a female and easily freaked out about something like my pinky chopped up!) so I talked about something else to distract my attention.
I'm new to learning about myotonia and CK levels so I'm not an expert on this, but I figure, because my CK levels run high regularly (as a result of the myotonia), I'm assuming this could potentially cause a lot of stress on my kidneys over the longterm. So I asked the DR, what can I do?

She isn't a neurologist, but she's been a doctor for 34 years, and she's super intelligent!
The first thing she said was CoQ10. Wow great! I explained I've been taking it, for a few months and it seems like it was helps with my myotonia.
She was convinced it is linked. She explained that the myotonia is most likely caused by a deficiency of CoQ10, our bodies already produce it, but in my case, there's a deficiency present (and she explained why that is, but I didn't have the foresight to bring a notepad to wrack her brain while she performed intricate surgery on my pinky, yet now I wish I had) which makes the supplement crucial.
She gave me a list of things in fact and they were -
CoQ10
Magnesium
Lots of Stretching
Eliminating Milk and Wheat (she said some people are sensitive to them and get inflammation)

We also discussed the problem with Iodine, but in my case, I absolutely need it for my thyroid function, as I've been through menopause early in life.

She was convinced that by following those steps, it should help eliminate the myotonia.
Keep in mind, this is not a cure, because you can't "cure" a deficiency in your body. It is something to address the symptom of myotonia only!

But if these things work for me, wouldn't it be 100% more helpful than a medicine that could potentially wreak havoc on my liver over many years to essentially achieve similar results (plus mexiletine does come with an impressively large laundry list of potentially harmful side effects - up to and including death in some cases)?
Now, there may be many people here with a lot more experience, who have tried it, AND disproved it, I don't know, but I'm already half way there as these steps are incredibly easy to incorporate into my own lifestyle. AND, I've already recently eliminated wheat (because it makes you fat and your body age, and when I mentioned that to the doctor, she confirmed it and gave me the reasons why it happens).
Also, I'm convinced, that in my case, this will at the very least make a big difference and it is exactly what I was looking for!

Again, I apologize for being so talky, but it's just not a good story without full explanations right!

Type of Myotonia: Myotonia

Country: USA

Re: Update - Message from DR to alleviate the symptom myotonia.

Hi Snuffy:
Sorry about your finger. The good news is, humans can actually regenerate finger tips, nail and all, at least with a little help.

Here is one story on it:
http://www.cnn.com/2010/HEALTH/09/09/pinky.regeneration.surgery/index.html

Myotonia is only a symptom of myotonia congenita. It can also be a symptom of a few other disorders.

Most people with a diagnosis of myotonia congenita either have defects on a gene called SCN4A or a gene called CLCN1. These genes make things skeletal muscle ion channels. You can think of the ion channels as little doors or portals in the wall of the muscle cell. Their job is to shunt certain types of ions into or out of the cell.

SCN4A makes sodium ion channels. These are little "doors" that let sodium ions into the muscle cell. This ultimately causes the muscle to contract.

CLCN1 makes chloride ion channels. These are little "doors" that let chloride ions into the cell. Their job is to interact with the sodium ions, causing the "power" to "turn off" and allow the muscle cell to relax.

People with SCN4A mutations that cause myotonia are said to have sodium channel myotonia. This encompasses a few slightly different disorders called Paramyotonia, potassium aggravated/acetazolamide responsive myotonia, and certain forms of periodic paralysis.

People with CLCN1 mutations that cause myotonia are said to have chloride channel myotonia. This encompasses the dominant form, Thomsen's Disease, and the recessive form, Becker myotonia congenita.

Sometimes thryoid problems can cause something called neuromyotonia, though it isn't true myotonia and resolves with treatment of the underlying disorder, and then there are more exotic disorders that cause myotonia or myotonia like symptoms, such as Anderson-Tawil Disorder, Stiff Person Syndrome, and Brody Myopathy, the first which also entails other physical defects, and the last which is actually due to a problem with an enzyme called ATP, which essentially causes something akin to rigor mortis while the person is alive...at least from my understanding...it's very very very rare.

Concerning butternut squash, in my experience it's easier to just buy it frozen and chopped.

Type of Myotonia: Becker

Country: USA