Living with muscular dystrophy

I have Muscular Dystrophy and was diagnosed at age 16, currently I’m 23. Despite this, I have gone on to do all the things. I share this, not to brag but to extend the exact knowledge about the subject.

Muscular dystrophy (MD) is a disorder that gradually weakens the body’s muscles. A group of muscle diseases that results in increasing weakening and breakdown of skeletal muscles over time. It is caused by incorrect or missing elements that prevents the body from making the proteins needed to build and maintain healthy muscles. In short progressive weakening and wasting of the muscles 💪

Diagnosis of Muscular Dystrophy

Muscular dystrophy (MD) is diagnosed through a physical exam and tests.These might include:

  • A muscle biopsy (the removal and exam of a small sample of muscle tissue)
  • DNA testing
  • Electromyography or nerve conduction tests
  • Blood enzyme tests

All are mandatory for diagnosis and have undergone.

Signs and symptoms typically may include:

The main is progressive muscle weakness

  • Large calf muscles
  • Muscle pain and stiffness
  • Fatigue
  • Learning difficulties (the IQ can be below 75)
  • Intellectual disability (possibly)
  • Begins in the legs and pelvis, but also occurs less severely in the arms, neck and other areas of the body
  • Problems with motor skills (running, hopping, jumping)
  • Frequent falls
  • Trouble getting up from a lying position or climbing stairs
  • Progressive difficulty walking:

Ability to walk may be lost by in due course of time and the person will have to use a wheelchair.Breathing difficulties and heart disease usually start by age 20. Muscular dystrophy is often degenerative, meaning that it slowly affects more organs and can’t be reversed. So, the person may pass through different stages as it progresses and need different kinds of support.

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Treatments for Muscular Dystrophy

There is no known cure for muscular dystrophy. For instance, scientists are researching on the possible, perhaps expected on the near horizon. Treatment aims to control symptoms to improve quality of life. But, it involves muscle weakness, which quickly gets worse, however turns unsuccessful. 

Steroid drugs can slow the loss of muscle strength. They may be started when the concern is diagnosed or when muscle strength begins to decline, but these steroids can’t withstand prolong. Other treatments may include:

  • Albuterol, a drug used for people with asthma
  • Amino acids
  • Carnitine
  • Coenzyme Q10
  • Creatine
  • Fish oil
  • Green tea extracts
  • Vitamin E

However, the effects of these treatments have not been proven successful. Stem cells and gene therapy may be used in the future which are still under R&D. The use of steroids and the lack of physical activity can lead to excess destruction of muscles.

Finally, Allopathic, Homeopathy & Ayurveda don’t have any medicines or treatments for muscular dystrophy. Perhaps I have consulted appropriately more than 120 renowned doctors collectively in past 6-7 years across the country- 🇮🇳. However, I’m not able and not sure what will happen next. This is the answer to whole society who keeps badgering me upfront about the subject. I’m tired now answering this question and consulting doctors. Coz, I have got the answer as NO.

It definitely requires special mental & physical management to overcome the limitations, disappointments, disturbances & disability. Despite of possessing, I still have the caliber and controls to correct and change my walks of life. It is possible to achieve more than that is imaginable.

LIVE & LET LIVE!!

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19 thoughts on “Living with Muscular Dystrophy

  1. I am spell bound. But kudos to you.
    You may be weak physically but mentally you are the strongest. You have been inspiration to me and many.
    Spread the awareness. Stay blessed.

    Liked by 1 person

  2. Danesh you were indeed a TRUE INSPIRATION for me … Seeing you rise and excel in life inspite of all hardships has always kept me going… I wish you prosper in whatever you do

    Liked by 1 person

      1. For your age CK levels should lie between 52-336 U/L. You have been diagnosed with MD for the last 7 years. Which muscles have been affected? When it started, the muscles on the right or left side of the body got affected?

        Liked by 1 person

  3. Thank you for sharing your story. I haven’t had any kids yet, however I know I am a carrier of the gene for duschene muscular dystrophy and I have a 50/50 chance of having a male child that will get the disease. I wish you the best of luck and hope that more progress towards finding a cure can be made sooner rather than later.

    Liked by 1 person

    1. Certain things are out of our control, this is one of them. It’s better to have hope and patience rather than worrying. Thank you so much for your generous words. I wish you likewise.

      Like

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