Limb Girdle Muscular Dystrophy, Losing our Mobility, Wisdom

LGMD, MD, MS, MND…huh??

Leanne Watson / July 16, 2017

Clearing up the acronym confusion

If you have had the time to run over my previous musings you will know that I have a condition called Adult Onset Limb Girdle Muscular Dystrophy.

LGMD is the preferred acronym for those of us that enjoy brevity in our writing (unlike what is shown this sentence) and do not enjoy the challenge of verbalising each sound as we plonk away at the keyboard attempting to spell really long and complicated medical words correctly; and/or really don’t quite understand what each word means as it’s such a new concept and therefore hard to recall the full name.







When I talk to people about my condition the most common questions that I receive are related to confusion between other neurological disorders that symptomatically seem to present similarly, their acronym is very similar and the conditions are, generally, more familiar to more people.

The most popular being Multiple Sclerosis (MS) and Motor Neurone Disease (MND).  I clearly recall my General Practitioner (GP) suggesting a possibility of Muscular Dystrophy (MD) when receiving suspect blood tests before sending me off to my Neurologist; I had a vague idea that it was related to muscle weakness purely based on the name and not through any real experience or understanding.

Hence 



I would like to clarify the definitions and try to dispel some of the confusion that others might also experience. Please note that I have no medical background besides band aiding cut knees, wiping runny noses and hiding heart worm tablets in cheese (that’s for the Dog) but I have tried to research accurately to cover the basics of each condition I hope.





Muscular Dystrophy – MD

This a name given to a collective of neurological disorders that are known as Myopathy’s and Dystrophy’s. They have a very complex bunch of causes which I very seriously struggle to understand but they seem to relate to various genes that are either not evident, not working or over produced resulting in loss or over production of various proteins that are required for healthy muscles.

The layman’s upshot is that the condition results in severely impaired development of muscles or muscle wasting and deterioration. Some forms of  MD such as Duchennes and Ullrich Congenital MD are present from birth, others such as LGMD and facioscapulohumeral FSHD  appear later in life, sometimes childhood and other times adulthood such as my Adult Onset LGMD.

MD can affect all muscles depending on the subtype including heart, digestive and respiratory muscles . Some of these conditions are terminal, some are not but most seem to impact ones life fairly severely.  LGMD affects the arms, legs hips and butt muscles and in a small percentage of cases also the respiratory muscles.  LGMD is very rare affecting approximately 1 in 14,500 to 1 in 123,000 with men and women equally being afflicted.

Motor Neurone Disease –  MND

In this aggressive disease the motor neurones that send signals from your brain and spine to your involuntary muscles gradually disappear. This results in muscle weakening, rigidity and atrophy and eventually death. Once diagnosed life expectancy is, on average, 2 years.

There are many types of MND , which is popularly called Amyotrophic Lateral Sclerosis (ALS), in the USA named after the most common subtype of MND. 



Many Aussies will know of the recent story of high profile former Australian Rules Football League  (AFL) player and coach Neale Daniher. He is using his diagnosis to raise the publics perception of the disease.

Many others are fighting and have literally died fighting to have the right to end of life choices legislated in Australia after being affected by MND . In the UK about 1 in 100,000 people are diagnosed with MND and it can strike people of all ages but particularly 50-70 years of age with slightly more being men than women.

Multiple Sclerosis – MS

This condition involves damage to the nervous system where types of scarring occur that inhibit nerve impulses from the brain, spinal cord and optic nerves reaching the muscles. The type and severity of symptoms is different for everyone affected with some symptoms including but not limited to muscle spasms, limited control of limbs, fatigue, heat sensitivity, continence issues and vertigo. Roughly 3 times as many women are diagnosed with MS as men, with age of diagnosis generally between 20-40 years old.

There is no cure as yet but there is medication to assist with rapidity and control of some symptoms. Approximately .1% (23,000)  of Australias population is currently affected by MS.

Women walking in beach with acrostic for LIFE in foreground
Image used without permission from the subjects.Thank you gal pals. Readers, please forgive my rather lame attempt at an acrostic phrase but it seemed an apt use and reminder 🙂

I do hope that helps a little bit to understand the differences between some of the muscle affecting neurological disorders that you have heard of.

If you wish to know more I have provided links below .

Until next time, TTYL 🙂

 

 

 

References:

NHS – UK: Motor Nerone Disease

NORD – National Organisation of Rare Disorders

MS Australia

Motor Neurone Disease Association

LGMD-Info  – Muscular Dystrophy Australia

 

 

 

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