fascioshd

Hi Ive got -fshd - facioscapulohumeral muscular dystrophy. Im 40 male with 2 children. I found out at age 32, after seeing several doctors and Physiotherapists who didnt know what was wrong with my muscle wasting on my Torso. I had Nerve Conductivity Test (was told have great nerves) and an MRI scan for the neck (discs worn, due to not enough of muscle supporting neck). and Blood test for diagnosis. - I have several wasted muscles chest/ back particularly shows as my upper arms are big only lost 1 muscle on right arm below elbow. My right arm droops forward as the muscles are affected on the top of my shoulder/back. - I have problems raising my right arm above my head. Other muscles compensate and get into some contorted positions if working above my head(eg fitting a light fitting with a screwdriver) so i can get muscles to hold my arm and turn screwdriver. Have had a bone growth on my collar bone where the bone is compensating for the weakness (only pea sized). - Day to day problems are fatigue and just being careful not to strain muscles/back. I could never pull my weight up on a bar more than a few times when young although had a harder punch than my friends (on those punch bag machines). When i was 19 lost shoulder muscle really fast and thought id got something really wrong with me. - Always had muscle fatigue in arms by the end of the day, even just walking around all day. -Then 1day (age 32) was walking in another city when i realised that my right arm was just flapping around weak and i didnt use it for anything so got help... - Have definate periods of muscle loss - getting more pronounced now (gonna see Doctor about starting a excercise regime for life). Also have problem with muscle travel ,ie wasted muscle that stop me for eg. being able to turn my neck completely to the right. When i seem to have a weakness attack- i can 1day lift a heavy log easily and then a few days later not even get it off the ground!- Also started to see weakness coming in earlier now, for eg, might find it too much effort to stand at toilet bowl so will sit down to 'pee'.-Months later will realise how long ive been doing it when come out of weak period and stand up too pee, then realise what ive been doing... Lucky though as doesnt stop me doing much that i dont want to. - Mentally, wish id new before having my kids as they may have it. Its genetic from my fathers side(dont know who it was so cant see how it affected him).Feel sad that may need to protect my family 1day and cant rely on my strength. Also how long i can work as major muscles going fast now and as the male want to provide for the family.... Luckily im better off than some people ie dont need a wheelchair and only minor leg muscle problems- If this is the kind of stuff you want or have any more questions im quite happy to respond . - By the way im a happy person always looking on the bright side always got a smile for everyone. Thought id mention that after it may seem im ranting on above. Find out which on it is -several different MDs around mines quite passive than some others. Biggest advice keep muscles supple (ie physio for rest of life)- so they dont start to contort the body and deform the bones permanantly like mine is starting to do through lack of excersice of things like 'rotator cuffs' and other supporting muscles. cheers chris