Hi! I'm Ron and I'm from Southern California and have never met anyone
else with Miyoshi Myopathy or LGMD2B. I first noticed that I couldn't
stand on my toes 18 yrs ago. I used to workout at the gym everyday so
I figured it was from straining too hard. Elevated Liver enzymes were
also the first thing they detected and I had the whole liver workup,
echocardiogram, muscle biopsy, nerve conduction studies, etc. They
later found that the CPK levels were 10,000+ and I was clinically
diagnosed with Miyoshi Myopathy at the time. I recently had a blood
test to confirm Miyoshi Myopathy and am having gene sequencing
coordinated by the Jain Foundation. I have tried everything from
Predisone to testosterone injections, androstenedione (before it got
banned),dexamethasone, CoEnzyme Q10, pentoxyfylline, tribulus
terrestrius, accupuncture and other alternative therapies, herbal
meds, Diltiazem, albuterol, protein and amino acid supplements,
creatine, etc. I am still able to ambulate without assist but I need
to use the handrail to get up steps. It is frustrating to be strong
once and to now be weak. However, I've learned to accept it and move
on. It's great to meet everybody else here and thank you all for posting.

--- In dysferlin@yahoogroups.com, "mmejia_28" <mmejia_28@...> wrote:
>
> Hi, my name is Miriam..
> I am from San Francisco, about to turn 21 years old. I started to
> notice signs of weakness during my senior year in highschool as well.
> I have always been into sports, primarily soccer. Sophomore year I
> went in for a routine physical to play soccer and ended up getting
> blood drawn. Those results showed i had an extreme amount of
> elevation in enzymes which led doctors to believe there was something
> wrong with my liver. My doctors at first were not letting me play
> soccer for fear that i might get a blow to my side further hurting my
> liver. Of course i know now that my liver is fine..About 2 years
> later is when doctors finally realized the problem was in my muscles.
> An electrocardio..something,(feels like rubberbands, they measure
> electric charges in the muscles), and a muscle biopsy as well as a
> lot of blood tests showed that i too have LGM2B. At first i was also
> in denial until i stopped playing soccer and almost all activity for
> that matter, gained some weight and now i am feeling the weakness
> more and more. My doctor said the best thing for me is to loose
> weight obviously and exersise (swimming recommended). It is hard for
> me to walk up a steep flight of stairs even with the handrail. Just
> walking down the street I fall more often and get bruised knees every
> other week (it doesnt help that i'm clumsy) and my balance is
> affected. I have a great boyfriend who knows about my disease and
> understands that in the future i am going to most likely need a
> wheelcahir and tries to help out when he can.
> It has been a bit depressing to know that i have this disease and
> that my life as well as my loved ones will be affected in the years
> to come. I have never met anyone with this type of disease but
> hearing everyones experiences really helps me out in understanding
> and coping with this disease. Thanks everyone please keep on
> posting...
> --- In dysferlin@yahoogroups.com, John B <bluedestin@> wrote:
> >
> > Hello, my name is John
> >
> > The funny thing is I am originally from Minnesota. I now live in
> Arizona and have met no one with my condition here. I too am 24
> years old. I noticed signs of weakness senior year of High School.
> I wasn't running as fast as I used to and figured that I was just out
> of shape. Around that time I went through testing to join the army.
> They found that my calf muscles were not the average size which made
> it impossible for me to complete some of their physical tests. I
> went through many tests just as you did and then found that I had
> Miyoshi Myopathy. My doctor prescribed creatine and CoQ10 for me.
> However, I tend to forget to take those so I don't really know if
> they work well. I am going to get married in a year. She came into
> the relationship completely aware of the situation. I warned her
> that I may be in a wheelchair someday. I think that day will be
> soon. I am having difficulty walking normal even with braces. I am
> thinking about an electric chair and hand
> > controls for my car when my situation requires them. It's really
> nice to meet someone in the same age group with this type of
> disease. I don't feel so alone anymore. I hope we can keep in touch
> and discuss more about common experiences or new knowledge.
> >
> > samanthasmith7 <hushfire777@> wrote:
> > Hi, my name is Samantha and I was diagnosed in March of
> 2007 with
> > LGMD2B at the age of 24. I first started showing signs of weakness
> > at the age of 20 but contributed it to a car accident I was in
> where
> > I was ejected out of the vehicle. I got pregnant in March of 2006
> > and had a complicated pregnancy. I was about 5 months along when I
> > started noticing that I was getting weaker. I had problems getting
> > up the stairs without using the handrail. My daughter was born in
> > December and within 3 months it became nearly impossible to get up
> > the stairs or getting up on my tip toes. I was referred to Mayo
> > Clinic in Rodchester, Minnesota where I have had every test
> > imaginable to confirm my diagnosis. Now, almost a year after being
> > diagnosed I am finally coming to terms with it. I've been extremely
> > angry and incredibly sad about being diagnosed with such a disease.
> > I worry about being able to do things with my daugher, now 14
> > months, and her and my fiance having to take care of me in the
> > future. My family and I have jokingly called me an "ostrich"
> > because I have not wanted to face this. So until recently I have
> had
> > no interest in trying to get better, no matter what the method may
> > be. As a result, I am already a stage weaker. Now I am really
> > scared.
> > As many of you have found, not much information is available on
> this
> > disease, what makes the process slower, or what "cures" it. It is
> > also near impossible to find someone who has it. That is why I am
> > so happy to be a part of this group. I can't wait to speak to
> > someone, anyone, who is going through what I am and to hear what
> > kind of things you are doing to treat this disease.
> >
> >
> >
> >
> >
> >
> > ---------------------------------
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> Search.
> >
>