Forms of muscular dystrophy
Discussion
Guys,
I'm looking for a bit of advice on a particular form of muscular dystophy. I forget the specific form but it affects the shoulder blade/upper arm and can also affect the face and legs.
My brother (Aged 23) has been suffering from a disorder that has attacked the muscles in his shoulder blades. This was first highlighted a couple of years ago after we went clay pigeon shooting and he hurt his arm.
He has had numerous tests and originally this particular strain of muscular dystrophy was ruled out, they were thinking that it was a reaction to an old football injury (where the body goes into temporary shock and eats the muscle).
The plan was for him to have two years of phyiscal therapy and if that didn't work they would fuse a couple of ones together to try and get the muscle to rebuild.
However today he has been to see a specalist at the hospital at Southampton university and they feel it's an 80% chance that it is a strain of muscular dystrophy which can affect the shoulder blade, upper arm, legs and face).
He has to have DNA tests and go back in three months for the results and for a further prognosis. I know I haven't given you much to go on (eg. the specific strain) but I would be interested to know if any one has any experience of muscular dystophy and it's affects.
I understand it's hereditary but we don't have any history in our family that we're aware of.
Cheers,
Phill
I'm looking for a bit of advice on a particular form of muscular dystophy. I forget the specific form but it affects the shoulder blade/upper arm and can also affect the face and legs.
My brother (Aged 23) has been suffering from a disorder that has attacked the muscles in his shoulder blades. This was first highlighted a couple of years ago after we went clay pigeon shooting and he hurt his arm.
He has had numerous tests and originally this particular strain of muscular dystrophy was ruled out, they were thinking that it was a reaction to an old football injury (where the body goes into temporary shock and eats the muscle).
The plan was for him to have two years of phyiscal therapy and if that didn't work they would fuse a couple of ones together to try and get the muscle to rebuild.
However today he has been to see a specalist at the hospital at Southampton university and they feel it's an 80% chance that it is a strain of muscular dystrophy which can affect the shoulder blade, upper arm, legs and face).
He has to have DNA tests and go back in three months for the results and for a further prognosis. I know I haven't given you much to go on (eg. the specific strain) but I would be interested to know if any one has any experience of muscular dystophy and it's affects.
I understand it's hereditary but we don't have any history in our family that we're aware of.
Cheers,
Phill
Guys,
Spoken to my Brother again and he's been told they think it's Facioscapulohumeral muscular dystrophy
Any one had experience with this type and the outcomes?
Thanks,
Phill
Spoken to my Brother again and he's been told they think it's Facioscapulohumeral muscular dystrophy
Any one had experience with this type and the outcomes?
Thanks,
Phill
You've probably researched this yourself by now but I thought I would reply.
The type of MD your brother has is one of the more common types of MD, it usually affects the face and upper body and the people I work with joke it is why they look like miserable b
ds all day.
As with all types of MD it is a fault with the genetic code of your body and as such some people will have a specific duplication of a gene and others will have genes missing. your brother by now should have been offered a gene test or biopsy.
It is difficult to predict what the outcome will be as everyone's specific gene fault is usually different and their progression with this disease is different some people have rapid progression and others slow however FSH is not thought to be life threatening.
This is going to be a terrible shock for you, your brother, parents and offspring if he chooses to have them and it will certainly change his life forever.
There are some websites that can help
http://www.mdforum.co.uk/forum/ A wonderful website of sufferers with a unique humour.
http://www.muscular-dystrophy.org/ a big generic website
There is currently no treatment or cure however there are many people working towards both these aims and it is important to keep a positive attitude moreso around your brother even if you don't feel like it.
I don't visit here much these days but I do check my mail every few days if you should reply.
The type of MD your brother has is one of the more common types of MD, it usually affects the face and upper body and the people I work with joke it is why they look like miserable b
ds all day.As with all types of MD it is a fault with the genetic code of your body and as such some people will have a specific duplication of a gene and others will have genes missing. your brother by now should have been offered a gene test or biopsy.
It is difficult to predict what the outcome will be as everyone's specific gene fault is usually different and their progression with this disease is different some people have rapid progression and others slow however FSH is not thought to be life threatening.
This is going to be a terrible shock for you, your brother, parents and offspring if he chooses to have them and it will certainly change his life forever.
There are some websites that can help
http://www.mdforum.co.uk/forum/ A wonderful website of sufferers with a unique humour.
http://www.muscular-dystrophy.org/ a big generic website
There is currently no treatment or cure however there are many people working towards both these aims and it is important to keep a positive attitude moreso around your brother even if you don't feel like it.
I don't visit here much these days but I do check my mail every few days if you should reply.
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