I have Miyoshi Myopathy which ive had for over 8 years now (im 26).
I had a Neurologist (Dr Victor Patterson) at the City Hospital, Belfast until he retired 2 years ago. I find it really hard to find a consultant that can help me and give me guidance as all ive ever been told is the Miyoshi is very rare and not much is known about it. My doctors refuse to give me stemcells or sterarods as i am over weight due to not being able to exercise. I do try to eat healthly and diet but when i am down or depressed (especially after a fall or broken bone/s) all i want to do is eat bad things.
I am worried as I work for a goverment Council and due to my absence levels have been told my job may be at risk (i work full time ) as they cant keep covering me under disablity aid (what are my rights?).
Any advice welcome