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I am John and have mc Becker. Symptons started to show when i was about 4-5 years old, i could suddenly freeze up and fall etc... I couldnt do much sports or activities with friends because i couldnt keep up with them. For example when we ran 50 meter i wasnt even half way and my friends already where at the finish line.. The only thing i loved to do was swimming, not fast or anything butt i could do it for hours. Without getting exhausted. I eveb played soccer for some years. When i got older my doctor told me i had mc thompson and to do as little sports possible because of the muscle hypertrophy, so when the years past and i got older, i gained alot of weight.. at one point i weight in a 105kg and just 1.66m. Just a few years back when i became a father, i did a dna test, the result, mc Becker. So a year ago i got a new doctor, i told her about my previous doctor who had adviced me to do as little as possible, she said that its an old fashioned point of view some doctors had in the past butt that some activity couldnt hurt me. So i started walking, doing some weight excersises 2kg (not any heavy lifting), sit ups, push ups etc.. i lost 30kg and am now weighing 75kg.. Now here are my guestions, and i hope somebody can inlighten me.. i thought having mc, is compareing yourself with a diesel motor, it takes some time to warm up and then off you go. Just like when i was a kidd and ran that 50meter sprint the first 25 meter were the hardest, butt the last 25 meter i ran like the wind. Now for the last six months i am doing my excersises, butt the push ups and sit ups are as hard as the first week i started. So why arent i gaining strength? I cant run.. walking is fine, butt when i try to run my legs wont bent, i am like a one legged pirate with a wooden leg trying to run, butt my body is saying no somehow.. butt when i was a kidd i only had starting issues. I tryed to swimm butt one minut in and all my muscles got cramps... when i was a kidd i swam hours. The weightlifting i can only take on 2 kg when i try 3 or 4kg i cant even get them up... i am trying this for six months now and yes i thought it wouldnt be easy to get fitt again, butt i am losing the weight, butt not getting the strength or stamina back.. How is this possible? I shoot be seeing some improvements by now regarding my strength and stamina?
Type of Myotonia: Becker
John, doctors refer to that effect as the warm-up phenomenon. It's one of the hallmarks of myotonia.
It seems to be fairly common for people with Becker's to develop weakness as they get older. It has something to do with potassium balance and sometimes it can help to take a very small amount of potassium (although larger doses will make the stiffness worse).
With myotonia congenita there is a strange response to strength training. The body tries to compensate by making type IIB fibers but after they form, they atrophy. So every time you go to the gym it's like you're starting over and didn't get any benefit from the previous workouts.
Are you taking any new medications? The statin drugs to lower cholesterol can make myotonia much worse. Any time someone tells me they saw a pretty drastic change over a short period of time, I suspect medications causing it. I'll paste in a list of contraindicated medications below.
Statin Trade Name
Statin Generic Name
Cerivastatin (withdrawn 2001)
Atorvastatin with Amlodipine (Norvasc)
Simvastatin with Ezetimibe (Zetia)
Non Selective Beta Blockers
Cardioselective Beta Blockers
Alpha and Beta Blockers
Type of Myotonia: Thomsen's
I know doctors call it the warm-up phenomenon, and in the past i experienced it that way too. Just as i described.
In my childhood the first 25 meters i ran went slow, but the last 25 meters went great. But now it feels i am always stuck in the warming up fase. And when i try to push myself to the limits, my body muscles simple cramp up and hurts.
I dont use any statin drugs or meds, the only meds i use is diphantoine z-100 (for 15+ years now) and i take that for the mc. My doctor wanted to proscribe mexeltine but my insurance wouldnt cover it, so i am still on diphantoine although i dont think its doing my body/muscles any good...
What can you tell me about potassium? How much can i take? In what food or drinks its in? Etc, would appreciete the help!
Is their nothing i can do to regain my strength and stamina? I am open for everything!
If i compare my strength with the strength i had 15 years ago its schocking to see the differance, so that doesnt look promosing att all for my future strength in 15 years from now. And that worrys me alot. Their must be something or anything i could do??
Type of Myotonia: Becker
John, diphantoine is seldom prescribed any more for MC. Mexiletine is the preferred medication, and some of the others are acetazolamide, carbamazepine, lamotrigene and flecainide. You might want to have your pharmacist see if there is any type of program for the Mexitil to help cover the payment, and if not maybe you can file an appeal.
Potassium is in all fruits and vegetables. It's probably highest in bananas. But too much can worsen myotonia, so just try smaller amounts at first if you use a supplement.
I would give the Acetyl-L-Carnitine a try. It really helped my muscle strength and stamina. This is a link to Amazon.uk:
Type of Myotonia: Thomsen's
I shure hope the MDA-supported drug VBP15 steroids without side effects Makes it through the FDA trials,predisone worked so well for Me"Had to stop using it because of the side effects,I hope this drug VBP15 will be available in the next three years,and gets rid of My weakness along with so many others needs"
Type of Myotonia: BM