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Cure for Distal Myopathy

Hi,

I need advise for my father. He is patient of distal myopathy which is proved by a team of doctor's 3 years ago and he has the problem since 5 years .First he felt pain in both feet then within few months pain had subsided but weakness generated in both of his legs. Now he cannot walk properly like a healthy man and his walking speed is slow compared to normal people around him .The portion below his elbows that is the fingers and the wrist specifically are very weak and also the portion below his knees that is the ankle and the toe are weak and thus he faces difficulty in operating those areas of the body due to severe weakness Now has been doing some physical exercise (Physio Therapy and Occupational Therapy ) from the past 3 years as per Doctor's advise. My father feels that his condition is either stable sometimes or has become worse sometimes but he has shown no considerable sign of improvement. As per the doctor he is far better than other patients with the same disease in a similar stage of the disorder.

Please advise any solution to this problem or any doctor that i could consult! ? And also is there any chance through which my father can get 100 % cured from this disorder ?

Please advise.

Thank You.          
2 Responses
209987 tn?1451939065
HI there. Sorry to hear of your father's problems.

A  geneticist may be able to provide you with more information, as MD is known to be a hereditary condition.
There is no known cure for any of the many types of MD, but there are many types of exercises and medications that can help ease the symptoms.
Below is a quote I found on it:

"Distal muscular dystrophy is a type of muscular dystrophy that affects the muscles of the extremities, the hands, feet, lower arms, or lower legs. The cause of this dystrophy is very hard to determine because it can be a mutation in any of at least eight genes and not all are known yet. These mutations can be inherited from one parent, autosomal dominant, or from both parents, autosomal recessive. Along with being able to inherit the mutated gene, distal muscular dystrophy has slow progress therefore the patient may not know that they have it until they are in their late 40’s or 50’s. There are eight known types of distal muscular dystrophy. They are Welander’s distal myopathy, Finnish (tibial) distal myopathy, Miyoshi distal myopathy, Nonaka distal myopathy, Gowers-Laing distal myopathy, Hereditary inclusion-body myositis type 1, Distal myopathy with vocal cord and pharyngeal weakness, and ZASP-related myopathy. All of these affect different regions of the extremities and can show up as early as 5 years of age to as late as 50 years old. Doctors are still trying to determine what causes these mutations along with effective treatments."

I hope that information helps you.

My brother tries to keep as active as he can so that he doesn't lose full mobility, and he uses prescribed marijuana to ease the pain.
The doctors also have him on anti-depressants.
I know this isn't what you wanted to hear, and I feel for your whole family.

It's hard to sit back and watch your father deteriorate, and I know you feel helpless as you have no idea of what you can do for him. My whole family feels this same way.
My brother too, is doing much better than what he was originally told  he would be doing at this point.
Although he has had a few heart attacks ( as he was told he would go through ) he is still alive at the age of 44. He was originally told that he probably wouldn't live past 30.  He had another heart attack a few weeks ago, and is now on medication to lower his blood pressure...but he's still alive, and that's what matters.

I wish your family and your father the best, and praying they find a cure soon.
1340994 tn?1374197577
Read about Nigella sativa.  It is an oil from a plant that has been known to help some with muscular dystrophy and many, many other conditions.  It has been called since ancient Egyptian times the cure for everything but death.  
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