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Hi, my son has a form of muscle degeneration, causing him a progressive muscle weakness. It all begun when we noticed that he had difficulties in standing on the toes or running, and he was only 13. The diagnosis said Miyoshi myopathy. Over many years, the disease has spreads to proximal and distal muscles. Now, seven years after the first symptoms, he`s on the exercise therapy and using wheelchairs. My only comfort is a fact that persons with Miyoshi myopathy live well into mature adulthood. Naturally, I`ve learned a lot about his disease, and found out that the cause of his illness is of genetic nature. But, neither me or my husband have this problem. What could`ve caused his illness?

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Hi, have some experience on that matter and I know there are two main ways for a person to get miyoshi myopathy. The first is inheritance of the genetic alteration from the parents, as you have already mentioned. That means that a mother and a father could pass on an altered dysferlin gene to their children. So the parents, like you and your husband, are healthy, but the child who ingerits two altered copies of that gene gets miyoshi myopathy. A kid who inherit only one altered gene carry his defect, without showing the disease. The second way is a development of a new mutation, not inherited from parents. That means a person could develop a new mutation in the second copy of the gene. And something about his exercise therapy, nobody knows is that a good or a bad thing for muscle diseases. That goes for Miyoshi myopathy as well.
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Hi there, I've had Miyoshi going on 22 years now.  It hasn't all been fun & games but I can tell you one thing, perservere.  I was diagnosed at 18yrs of age, fighting fit & training for the olympics in Taekwon Do when it was taken away from me, the trigger, severe trauma.  I had a motorbike accident and was lucky to live.  Drs told me that I always had the disease but it never showed itself until the trauma.  I was told that both parents had to be carriers in order to have it & it was mostly predominent in males.  Females can be carriers but not show symptoms or be adversely affected in any way.  Back then, no-one really knew too much about it so was hard to pinpoint, 9 years of testing, doctors, hospitals etc, wasn't easy but eventually a neurosurgeon told me he had seen it in Japan, where it is predominantly found and so at least we had an answer.  I was put onto steroids 50mg per day for years but this did nothing but make me angry and bloated.  Once I ceased taking these I did other trials to see what would work & what wouldn't, being a ginnea pig for so long wears thin.

I was the first in my family to be diagnosed, I also have 2 other brothers who have it, it's definately genetic.

I ceased to be able to stand on my toes, can't run and often had trouble walking, legs would collapse from under me at times with little muscle control.  They told me a wheelchair within 10yrs of diagnosis, thus far, no wheelchair and I'm still walking.......

After a discussion with a friend that I had only recently met, he told me about something that may help in rebuilding the muscle enzymes, increase strength and ultimately give me more energy.  It was hydrogen peroxide 35% food grade.  There are so many benefits of it it's amazing and should be looked at, so I googled it and started to research it and to my complete astoundment, have found that it is working.  It is safe to take if done properly but by all means talk to your doctor about it.  I've spoken to several doctors and have all agreed that is is worth the try, after all, over 20 years of trying everything else what harm could it do???

Well, let me tell you, I've only recently started taking it - 4 weeks now, 3 times a day and I can tell you, for the first time in 20 years, I can stand on my tippy toes and you have no idea how excited I was at this.  I haven't fallen over in weeks & am walking almost like everyone else.  My legs are steadier and I have more energy.  I can walk 2-3kms a day, and for the first time in I don't now how long, my leg muscles are aching!!!!

I also lost muscle around my upper chest, resulting in a hollowed out look, they are now building up again and I feel stronger and more capable of doing everyday things that I was before.  Yes, I am 41 years old but I can tell you one thing, it's incredible to be able to do it.   I'm not sure of the long term effects as it is only the early stages but the changes are dramatic.

I'm under no illusions that this may burn it out, but for the short term, the signs are promising and I will continue to use it.  Some GPs are not enthusiastic about it but doesn't hurt to ask.  I will continue with progress reports on this site and we'll see how it goes, hopefully, it will continue to benefit me and anyone else that has the same condition may also benefit.

 

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My path has been very similar.  Please update about the hydrogen peroxide 35% food grade.
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Where do you purchase your hydrogen peroxide? There are a lot of products on the market, I just want to be sure to get the real deal and not something marked hydrogen peroxide.....
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Hi I would like to listen what will be your muscles condition after a year with hydrogen peroxide 35% food grade. Are u still using it? please share your experiences.

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Hi there, in answer to your question, yes, I am still using it. I have found the benefits to be quite amazing. I currently take it 3 times per day every day. Bearing in mind that I've had the condition for 24yrs and it may be a long and slow recovery but what I have noticed is that my myoshi myopathy has improved in such a way that my legs seem stronger and I am able to walk more steadily and with more control. My depression and anxiety have eased dramatically and I no longer seem to have the anger issues I experienced prior to my commencement of taking it (I was previously taking 50mg of steroids per day for 3yrs under doctor supervision and this didn't help at all other than making me bloated and aggressive). My short term memory also seems to have improved along with other stomach issues I had been experiencing. Due to my condition, my immune system was weakened because of the steroids and would end up in hospital each year with severe flu but now it seems that the hydrogen peroxide has assisted me in improving my immune system (along with juicing fruit/veg every day) and I have not had to go to hospital in a long while. You must also ensure you continue with exercise as I found that when I stopped exercising my condition got worse quickly. I will continue to monitor my progress in the months to come and see where I end up. There is a website that you can access online

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which has many recipes you can use that may also assist.

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Thanks for reply. You mentioned one website but I guess URLs are restriced on this site. If you just provide site name that will work.

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If you just google juice recipes this will work.

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hello i was wondering if you could run or jump yet? could you climb the stairs without holding onto the rail? did the dramatic improvements stop after awhile? Im sorry to hear that your brothers have it as well, im lucky my brothers havent gotten it also, i thank god. I was diagnosed when i was 17 with lgmd 2b and im 29 now and in a wheelchair so any improvement would be a godsend. do your brothers use the hydrogen peroxide as well? I know what you mean about it being a long hard road and being a yound athlete then having it all swept away from under you. in the years following my diagnosis i was dumped by my super cute girlfriend (i was never to date again) and i eventually lost all of my friends now my only friends are pretty much my 2 brothers , my mother and my uncle.. i Sincerely hope things are going well for you.
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thank you very much for posting.
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According to an FDA press release, "The U.S. Food and Drug Administration (FDA) is warning consumers not to purchase or to use high-strength hydrogen peroxide products, including a product marketed as "35 Percent Food Grade Hydrogen Peroxide," for medicinal purposes because they can cause serious harm or death when ingested. FDA recommends that consumers who are currently using high-strength hydrogen peroxide stop immediately and consult their health care provider"

"FDA previously warned consumers, in an April 1989 press release, about the illegal promotion of industrial-strength hydrogen peroxide to treat AIDS and cancer, following at least one related death in Texas and several injuries requiring hospitalization."


The Jain Foundation is currently working to speed the development of treatments for Miyoshi Myopathy/LGMD2B. If you have this disease, please register with the Jain Foundation and we will inform you of any new developments in therapies for MM/LGMD2B.

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Hi i have the exact symtems you have and the first person in Australia to be diagnosed with miyoshi myopathy. How is your little experiment going? I think i would like to try it ! No one else seems to want to do anything about it!! cheers Adam
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yes, You are right this disease is hereditary.It could be possible that you and your husband could be carriers of the mutated genes that cause this disease.You could get yourself tested with genetic testing to confirm if you carry these mutated genes as carriers of an autosomal recessive condition typically do not show signs or symptoms of the condition.
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My Experiment is going well
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