MY SILENT BATTLE WITH M.S.A.
MY SILENT BATTLE WITH MSA
WHAT IS MULTIPLE SYSTEM ATROPHY (MSA)
WHAT IS SYSTEM ATROPHY
Multiple System Atrophy (MSA) is a neurodegenerative disease marked by a combination of symptoms which affect movement, blood pressure, and other body combinations , this is where it gets the name "Multiple System" Atrophy. The cause as yet is unknown.
LIVING WITH MSA
Where do I start. Well, I have suffered from ongoing probems with my health for so many years now it is difficult to go back to wear this all began. I guess you could say basically for the last ten or so years I have had problems with my digestive system, urinary, problems walking, balance and numerous other symptoms. My MSA has become so bad now that I have a carer who comes in every day to assist with my daily needs..
I have seen many specialists for a number of years in the various fields that I have mentioned and all of them have treated for that particular area,non of them realising that maybe in fact, all these problems were somehow linked in a way that non of them at the time could see. I would find that when I stood up from time to time, my legs would become so hard and rigid that it was as if they had turned to cement. Then there were times when for no particular reason, I would start to slur my words and would get the occasional tremor in my right hand, which was only for a few minutes and then it would stop.My bladder was also causing me problems.
I was also diagnosed with severe degenerative disc disease in my neck, which led two having surgery on my neck to having laminectomies performed on the diseased discs and inserting titanium discs. I have lost count of the number of MRI's I have had performed over the years.I had a stroke in 2004.However, my neurological system didn't seem to recover,they were unable to put their fingers on just what was wrong, My doctor thought I had something like "Multiple Scerosis" or something along those lines. As it turned out I didn't have Multiple Sclerosis but he was on the right track.I was admitted to Hospital for more surgery on my neck to fix another problem with the discs. My Neurosurgeon was walking up behind me a few days after my operation without my knowledge. When I got back to my bed and discovered he had been there, he inquired "how long have you been walking like that".He was in fact, referring to the way I had been dragging my right leg. Of course I had been doing it for some time. He suggested I see another Neurologist.
That afternoon the Neurologist came to see me. He asked me to tell him about the symptoms I had been having for such a long time and to try not to leave out anything because everything was important, even if it seemed trivial to me. After I did this, he gave me a very thorough examination, including lots of neurological tests such as touching my body with various objects and asking me if I felt them and whether they were blunt or soft. This seemed to go on for such a long time I was getting very worried about what was wrong with me. After he had finished his examination, he looked at me and starting asking more questions, some of them very personal, but he said that they were very necessary, even if I found it hard to answer them because I found them embarrassing. He then said he thought he knew what was wrong with me but he wanted to go and do some research, check out my results from the tests that he was having done and last of all he was going to send up a couple of medical students to see me. . He has been here two hours, asked me an abundance of questions and performed the longest examination I had ever had in my entire life. Now, he also wanted me to see some medical students, maybe it was something rare I thought and he didn't want to alarm me until he was sure of his facts. I got myself in such a state that the nursing staff were all trying to calm me down by saying not to worry too much because it may turn out to be nothing at all. But my gut instinct was telling me something different, and I was more inclined to go with that rather than believe them.
Later in the afternoon, just after lunch, they arrived. No a couple, but there was eight of them. One by one they each introduced themselves and asked me if they could ask me some questions about my medical history and then if it was alright to examine me. They were all so very professional, which put me at ease more, and informed me of what they were going to do before they actually did it to see if I was comfortable with the idea. It took three hours for all eight to complete their questioning and clinical examinations and leave me in well I couldn't say peace, because I was far from that. I couldn't stop thinking of all the things that could be wrong with me. As all thoughts of various illnesses and diseases rushed through my panicking mind, I was hoping all the time that it was something that could be cured and not something that couldn't.
DISCOVERING THE TRUTH
I hardly slept at all that night because I couldn't get the thoughts out of my mind that something bad was going on in my body and I was about to find out what in a couple of days. The night sister came in several times during the night offering me cups of tea, I must have had at least two or three, not to mention all the biscuits and cheese that I consumed
I had a light breakfast becomes my tummy was in knots. I couldn't relax, nor get the ideas out of my head that something could be seriously wrong with me. No matter what I did, reading the paper, watching TV, even talking to the nurses, they still crept into my head. I wanted so badly to know and then again I was scared of what I was going to be told when I next saw the Neurologist. I didn't think it would be too long though before he would be back and the verdict would be revealed.My nurse arrived with my morning medication which I took and informed me that my Doctor was on the ward and would be in to see me very soon. I decided to get my shower out of the way after I had finished my breakfast so that I was nice and refreshed and ready to hear the news that he had for me regarding my diagnosis.
Finally, I heard him coming towards my room and then t owards my bed. He didn't look like he was the bearer of good news, in fact, his face was very serious looking, not even a little smile or smirk was obvious. I began to sense that he was about to give me a diagnosis that was not good . He said he had come up with a diagnosis for why I was experiencing the symptoms I was having and why I felt so tired and so out of sorts all the time. He said there is no easy way to say this except to tell you that you have a disease that is called MSA, or to put it another way "Multiple System Atrophy". My first response to that was to just say "what did you say I have "Multiple Sclerosis". No, he said, I told you that I believe that you have a disease called "MSA", Multiple System Atrophy". I told him I had never heard of this disease. He said most people haven't heard of it. In fact, it is very hard to diagnose because of the complexities about it. It usually takes a number of years after you have been experiencing problems with all the systems of your body, just like you have, before a diagnosis can be made, and even then it is usually made by a process of what disease fits with the symptoms and clinical signs that the patient is suffering from. But there is a chance you could be wrong too, isn't there I asked him. Yes, but in your case everything fits with the diagnosis of MSA.
To say that I was shocked by this new revelation would be an understatement. The worst of this news was when he told me that there was no cure for this disease. He said all the problems that I had experienced with my digestive system, urinary system, etc, were all related to having this disease. I became very teary at hearing all this and he did his best to comfort me, but I was so upset it was very hard to believe that I had a terminal illness. The Sister in Charge put her arm around my shoulder in an effort to comfort me also and said that they would give me some reading matter to peruse about MSA and then I might be able to understand it a bit better. I said that I would appreciate anything she had to read because I wanted to know what was going to happen as this dreadful disease worked its way through every system of my body. My Neurologist told me that everyone is different and not everyone gets the same symptoms as each other. In fact, there are various forms of MSA;-
ORIGIN OF MULTIPLE SYSTEM ATROPHY
In 1960 two researchers , one called Dr. Milton Shy who came from the National Institute of Health, USA, and Dr. Glen Drager from Baylor College of Medicine, Houston, found that there was a very commone set of neurological manifestations in some patients that were associated with failure in their autonomic systems. They originally called this complex syndrome " Shy-Drager Syndrome, which is now currently referred to as "Multiple System Atrophy" or MSA
WHAT ARE THE VARIOUS FORMS OF MSA?
Symptoms of MSA can vary in their distribution, onset and severity with every person . Because of the fact, three different diseases were named to encapsulate all of the symptoms that people were suffering from. These were named as follows:-
1. Shy-Drager Syndrome
2. Striatonigral Degeneration
3. Olivopontocerebellar Atrophy
In Shy-Drager Syndrome, the most prominent symptoms are the ones that affect our
Autonomic System. This is the system whose primary job is to regulate our blood pressure, look after urinary function and any other functions of our body that we don't have to be consciously aware of what they are doing.
Striatonigral Degeneration. This is diagnosed when patients present with symptoms that are related to Parkinsonism, such as slowing up of their movements around the place and stiffness and rigidity.
Olivopontocerebellar Atrophy. Patient usually present with difficulty with their balance and their coordination. There is also problems with speech, with complaints of slurring of speech also.
WHAT ARE THE SYMPTOMS OF MSA?
* Stiffness and Rigidity
* Slowing up of Movements and freezing
* Postural instability; Loss of Balance and Incoordination
* Orthostatic Hypotension (significant drop in blood pressure)
* Male Impotence
* Difficulty passing Urine
* Problems with Constipation
* Difficulty with swallowing and problems with speech i.e. slurring words
* Blurring of Vision
WHAT ARE THE COMPLICATIONS OF MSA?
In its early stages MSA is easier to live with but over the course of several years, the symptoms become more widespread and a lot more severe in nature. People can become faint and even fall when they suffer from Orthostatic Hypotension. There can also be a considerable loss of coordination, walking can become slower almost to the point of not being able to walk and rigidity and stiffness will interfere with the things that you like to do during the day or night. In other words, your social life is the thing that suffers most, because you don't want to go anywhere. You may feel subconscious about your symptoms, especially the tremors in your hands. Then there are the times when you are having a perfectly normal conversation with someone and all of a sudden you start tripping over your words which then leads to complete slurring of your words to the point where you can't put two words together. I ask you, why would anyone want to subject themselves to a life like this. But you do, because if you don't your only alternative is to live at home like a vegetable and that is no fun at all believe you me because I did just that until I realised that it was the wrong thing to do.
ARE THERE ANY TREATMENTS FOR MSA?
Yes, there are a number of drugs that are being used to treat various symptoms relating to MSA, but I was told by my Neurologist that these are known to become less effective as the disease progresses.
Levodopa and Dopamine Agonists which are drugs that are used to treat people with Parkinson's Disease are sometimes effective in the treatment of the symptoms of slowness and stiffness and rigidity in MSA.
Fludrocortisone is a drug used primarly in the treatment of Orthosatatic Hypotension whereas Mitodrine along with some other drugs, can be used to raise the blood pressure.
Men can be treated for their impotence with the use of Penile Implants or sometimes even some drugs
If someone is suffering from Incontinence they could be help by catheterisation
If on the other hand, their problem is one of Constipation, then increasing your dietary fibre intake or using laxatives is recommended
Speech Pathologists are always available to offer you strategies to improve the problems you have with your swallowing and speech. Another point of interest to note is that it may become necessary in the later stages of the disease to have a Gastrostomy Tube, which is a tube that is designed to deliver your food straight to your stomach.
THE LONG TERM OUTLOOK FOR MSA SUFFERS
MSA usually hits people around the ages of fifty to seventy or thereabouts. The majority of men and women who are affected by MSA do not as a rule, have a very good prognosis. In fact, the survival rate is usually seven years after the disease has been diagnosed. It doesn't seem very long does it? Records show that what is obvious is that the more severe involvement that the Autonomic Nervous System has in the disease, the poorer the prognosis is. However, those whose Striatonigral System is more seriously involved have an even shorter period of life from the time that they are diagnosed. I guess the motto here is live each day to the fullest because you don't know now if it is your last. That is what I am doing and will go on doing until the day comes when I can't do the things I enjoy anymore.
ADDITIONAL RESOURCES AVAILABLE
* Advocacy/Support Organizations can help the MSA patients and their caregivers
learn coping strategies and they can offer support to them when they encounter any
difficulties in their dealings with their MSA
* Multiple System Atrophy Discussion Forum
I wish to point out also that there are books in Medical Libraries in particular for Medical Professionals to read that give a much broader picture of what Multiple System Atrophy is all about.
WEBSITE ; There is a Website called 'PATIENT'S LIKE ME.COM that you can join for not only MSA but also for other illnesses. You can give a description of your illness, tell the treatment you are on and they will suggest the names of a caregiver that you can e mail that will help you cope with your illness with regard to not only the treatments, such as medications you are taking but any other assistance, such as massage, etc. I have joined this as I am hoping that it will aid me in a lot of ways.
If anyone reading this is suffering from some or all of these symptoms, please have yourself checked out as this is not a disease to muck around with. I was originally diagnosed with Fibromyalgia,and went for four years thinking this is what I had. Then one day, I realised that things were changing from what they had been previously and luckily for me, my diagnosis of MSA, even though it has been a tough one to handle and is hard to get through each day to the next, it was good to finally know that there was indeed something more sinister lurking in the background and now I knew what it was. Remember that old saying IT'S BETTER THE DEVIL YOU KNOW,THAN THE DEVIL YOU DON't.