What can I do, muscular dystrophy & breathing difficulties

Hello everyone,

I registered on these forums in an effort to find out any answers and advise how I can get the right help.

Background information.

Since an early age, before 5-years old I have been in/out of hospitals with various health issues, most not serious enough to hamper my quality of life.

But a few years back (4-5 years) I started to feel weak in the muscles and this soon progressed to unable to walk which put me in a wheelchair since then, and progressively my body and muscle became weaker, with in-ability to walk because had no strength in the legs was also followed by my arms not been able to lift them or used them.

My finger movements have remained somewhat, but now getting to stage with limited mobility soon affecting them.

Doctors have performed countless tests including, blood, mucus, gene testing among others, but have not been able to diagnose my disease, both my parents are not showing any gene defects.

Doctors have said:

A biopsy can be done to determine any changes in my condition and see muscle cell structure.

i.e. cells with little dots can indicate a certain type of disease that is seen, but this is unlikely to yield results as my muscles have deteriorate to a stage that catching the type of disease early enough is long gone.

There are thousands of patients throughout the world with similar symptoms, they tell me, which gives me no comfort at all, nor does it provide any answers.

They says, Laboratories across the world have conducted tests/analysis on these patients, but cant determine what type of disease it is.

It is not an "inflammatory type disease" as the outcome to the patients health will be a faster rate of decline to their health, which leads to the "pulmonary specialists" to lean towards a genetics disease, even though my parents don’t currently show any type of genetic defects.

This is not to say that medical improvements in the future will be able to detect a gene defect.

So looking else where for any specialists and medical experts/medical advise that I can reach out through social media or web forums like yours else for answers.

I know its a long-shot, but I have nothing to lose by trying.

I hope someone has info on possible ways to diagnose what my disease is and not tell me its an "unknown disease", when we are nearly in the 2020's and you hope medical sciences and studies can be done on patients to get somewhere.

Kr.

J.

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