Muscular Dystrophy by elimination - not sure

I was born a premature child of 30 weeks in 1962. I was a normal child with an inherent weakness attributed to my premature birth. In my 11th grade, I started experiencing pain due to fatigue in my right shoulder when I lifted it overhead for a period of time. A visit to the hospital pronounced it as muscle wastage by a physiotherapist.

A series of tests were conducted and the discharge summary had the following maybes - Tetanus, Atrophy, Dystrophy. I've been weakening ever since and am still mobile on my feet though pretty unsteady with a waddling gait. Tetanus and atrophy were ruled out but tests done for CPK and dystrophin are not conclusive. My CPK was 800 and droped to 180 in a year. All shoulders, hips, facial and abdomen muscles are quiet weak. My nervous system seems good when tested for conductivity and I'm quite a sane, accomplished professional.

I have learnt to understand my body and believe I know it better than doctors; though they tend to think otherwise. I was having fibrillations (involuntary twitching and spasms of muscle) and saw a pattern where within 6 months of fibrillation, that specific muscle group where the fibrillation occured would become weaker. The fibrillations were frequent every day and tapered off over time to the current twice or three times a year. I've reached the conclusion my body has stabilised.

On the family tree, this has not manifested for 3 generations on either paternal or maternal side. I believe dystrophy would show up in alternative generations statistically speaking.

During the ailment's early stages, I was put on Dianabol (anabolic steriod) for 2 years before it was withdrawn by the manufacturer Burroughs Wellcome. Subsequently, I was on supplements mostly. A trial was done with Vitamin E (400mg twice a day) in large doses as some study had shown some impact. No impact for me.

I'm tracking medical frontiers to see what could help. Stem cells is talked about a lot. I also saw a report on mice that a specific molecule built muscle pretty fast. This was experimental though and predicted human use in 10 years.

If someone has some knowledge to add, it would be great.