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| Did my world turn upside down? |
No.. my world did not turn upside down. Perhaps it was because for the previous, roughly five years, I had all the up's and down's of BHP, the endless PSA blood tests, the biopsies, the question mark about prostrate cancer, the endless feeling of exhaustion and the continuous dull but nagging pain in my legs and pelvic area. I was simply relieved to have a conclusive diagnosis, and that diagnosis explained so many of the symptoms I already have and others that are developing. Another reason that I did not loose my marbles, was my Faith. That is a complete story on its own and worthy of a post all of its own. I will slot it into this blog in the not too distant future.
I have MSA, Multi System Atrophy, it is as simple as that! Now was the time to find out all I could about this rare disease. Could you imagine how difficult this would have been without the modern technologies of search engines. There was fortunately, a huge amount of information to be read, analysed and digested. Most of it way over my head and very technical from a medical point of view. One "simplified" document I found that I could easily understand, was from the famous Mayo Clinic. I have copied part of it to page of this blog under the title MSA Basics. (When you have time, read the document here) Many of the other publications helped to fill in the blanks and I continue to read others almost every day. One that is particularly up to date, although full of medical jargon is Medscape. Others are listed on left of this page under "Suggested Links".
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| Relates to .005% of world population! |
The major motivation in creating this blog, was the rarity of the disease. In South Africa, very rare indeed! To the extent that many doctors (GP's), Nurses, Care Givers, Physiotherapists, Dieticians etcetera, do not even know about the disease. Most that I talk to about MSA look at me vaguely and tell me they seem to remember hearing something about it when they were training.One cannot blame them! Medical science is a huge sphere and nobody can remember all diseases, especially rare diseases unless they are exposed to them on a continual basis. I am going to attempt to unlock the mysteries of Multi System Atrophy in this post, as simply as I am able to and from my personal perspective as a patient. This is not in any way an advice or professional medical blog, it is simply "My Journey with MSA."
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| Loss of Brain Cells |
Many, many years ago when I was training as a beauty therapist and makeup artist with Guerlain France, I learnt that when we were born, we had billions and billions of brain cells. A fixed amount. From our first gulp of mothers milk we produce waste matter that is disposed via our natural elimination process, however a tiny amount of waste is left behind in our cells and believe it or not we begin to die, even our brain cells start to die. They never replace themselves and very, very slowly over our life, we have less and less of them. Even though I have a few billion less, now that I am three score and ten, there are still some billions left. What has this to do with MSA.. very little, however the neurons in the brain are less and these neurons are atrophying! They are breaking down, almost like a domino effect and with a hugely accelerated speed.
So, what do these neurons do? They send signals, for example, to our autonomous system, telling them what to do and how to behave. So, what is our autonomous system? They are the organs that you and I do not have to think about, to make them work. Your lungs, your heart the blood system, your kidney's, your bladder, your stomach and all the others.
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| The Atrophying of Neurons - Less Signals to Autonomous Organs |
In essence, with fewer signals from the neurons, fewer signals get to your autonomous organs, your organs do not know exactly what to do, they begin to collapse, you begin to die. There is no cure and there is no treatment. The only thing one can do is to treat the symptoms as and when they occur and keep the functioning organs as healthy as possible and for as long as possible.
Multiple - Many, System - Organ/Functions, Atrophy - Neuron signal break down.
MSA is not a form of PD, Parkinson's Disease. When diagnosed, one is either MSA - P (with Parkinsonian Traits) or MSA - C (with Cerebellar Traits). When I read my Neurological file in the waiting room, I noticed that Dr. Whael had simply written, "Diagnosis: Multi System Atrophy". This made perfect sense even though it was the discovery of the tremor in my right hand, a parkinsonian trait that pointed to the MSA. After the examination and tests and analysis of the symptoms, I had both parkinsonian and cerebellar traits. I personally call it "Full Blown MSA".
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| Typical Neuron Degeneration |
I need to digress here. In February 2018, on a routine check at Urology with the Assistant Head of Department, I told him about the MSA diagnosis. At my suggestion, we both agreed that the MSA would kill me before any prostrate cancer. We moved from six monthly visits to yearly checkups. The next visit will be in December 2018. I will continue the medication, Doxazosin, it keeps the waterworks open and flowing.
Every culture has its own swear words and differ from one ethnic group to the next, one country to the next. Believe you me the world of MSA has its own universal, dreadful swear words!
[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]
Advice: For peace of mind, I find it always helps to discover as much as one can about one's disease. Never self diagnose, always discuss your thoughts with your doctor or neurologist.
(Next post... Learn how to Swear the MSA way!)
Keep safe,
Neill
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Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com
