I have a disease that cannot be fully diagnosed until I am dead and they look at my brain. On that day doctors will look under a microscope and be able to tell for sure if a certain protein has folded itself into arrant origami, unable to pass through the neurons. Although I will gladly give my brain for research, I am requesting that my family not be told whether I actually had Multiple Systems Atrophy or if it was just a wad of bubble gum stuck in my ear. I do not want them to think that there might have been another cause for my symptoms or to think my medical team did anything wrong. If only they had pulled that gum out of her ear everything would have been fine.
It’s pretty clear at this point, after 10 years of fainting and losing control of my bladder to finally find a doctor that could order the right tests to rule out the other things it could be.
I am ten years into having MSA, and two years more with a diagnosis. According to the Mayo Clinic website, people with MSA typically live about seven to nine years after multiple system atrophy symptoms first appear. Ten-year survival is rare. The thing is I decided to be a non-compliant patient and not follow all the orders I am given. Dr. Bernie Segal, in his book Love, Medicine and Miracles noted that non-compliant patients often lived longer than those who follow all the instruction and die on time.
I have explored every nook and cranny of alternative medicine, faith healing and even several years of therapy. I though what was happening was all in my head. I was right, but it was not a mental disorder.
A DAT scan showed I have a buildup of alpha-synuclein proteins, folding into wacky folded origami that stops the flow from neuron to neuron. There are a bunch of diseases that have a similar story. A protein of one type or another, fold up incorrectly somewhere in the brain. They cause Parkinson’s, Alzheimer’s, and many others. It just depentds on what protein and where it is in the brain. With MSA it boils down to a deterioration and shrinkage (atrophy) of portions of your brain (cerebellum, basal ganglia and brainstem) that regulate internal body functions, digestion and motor control. Not something you want to have.
MSA does not have a list of definitive symptoms, it’s more like a choice of one from column A, three from column B. Depending on the combo, there can be a Parkinson’s type or a Cerebellar type. So people who have this disease often question whether their symptom could be related to MSA or not. Dry blurry eyes? Yep. Cough and choking? Yep. Pretty much every answer is yes because of the multiple part of the disease.
This is about my personal experience, for goodness sake see a doctor if you have any of these symptoms, they all suck. Thank you to the Mayo Clinic web page for the actual medically correct information:
Predominant signs and symptoms are those of Parkinson's disease, such as:
Predominant signs and symptoms are lack of muscle coordination (ataxia). Signs and symptoms may include:
This is what happened when I was told I had MSA. Remember much like being informed of the death of a loved one, sometimes what actually is said is not what was really said. Your brain shuts off at a certain point. It is always a good idea to have someone with you for doctor’s appointments. So here is my account, which my husband says is not correct.
Two really smart Neurologists came into the room,
never a good sign.
Doctor #1: First the good news, you don’t have Parkinson’s.
Me: Thank goodness! That would be horrible!
Doctor #1: Well, you do have another Parkinson like disease (looking at the computer screen not me) It’s called Multiple Systems Atrophy. I have asked Dr. #2 to come in with us, she is the specialist in this kind of disease.
Me: speechless, dizzy, can’t breathe
Dr. #2: I suggest that you apply for disability right away. MSA is on a compassionate care list of diseases that will move you quickly along in the system. It is a list of disease where time is of the essence. Then get to know the hospice group in your community. You might not need them right away but it’s good to have something prearranged. Oh, and we want your brain for research after you die.
Me: Is there a surgery or pill? Some cure for this?
Dr. #2: No, I am sorry. We can treat your symptoms and keep you comfortable, but there is no cure for this disease and there is a shortened life expectancy.
Me: Well *&$!@$%^&&!!!!!!
My husband and I make our next appointment and walk without speaking down a long corridor to the parking garage. We both started crying. I said I was going to commit suicide when it gets really bad. He said yes, I know, but that is not today.
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