I will never forget the day I was told I had MS. I was at home, still lying in the bed, when the telephone rung. My husband answered and then handed the phone off to me. “It is your Doctors’ office.” he whispered as I took the receiver from him. With more than a little trepidation, I took the receiver from him. I knew they were probably calling to give me the results of the MRI I had done the previous week, but I didn’t know what those results would be. Was it a tumor, an aneurysm, brain cancer? Surely, if it was something like cancer, they wouldn’t just call me up and give me news like that over the phone, would they? My mind was going a 100 miles a minute. Worse yet, what if the test didn’t show anything and all of these maddening, vague symptoms would be just a figment of my imagination. One of the Doctors, I was seeing at this time, had hinted as much, bringing up the fact my Mother had passed away the year before.
“Maybe your symptoms are grief related?” The doctor suggested
I answer the phone, by saying, “Hello, this is Melissa” in the brightest voice I could manage. I was relieved when the voice on the other line was one of my oldest friends who worked as a nurse practitioner in my Doctor’s office. Maybe Doc thought it would cushion the blow if I heard it from someone I knew.
“Missie,” my friend said, in a very professional voice, “We have the results of your MRI. Your MRI shows you have Multiple Sclerosis. It shows multiple lesions on your brain”
She said some more things after that but, frankly, I had stopped listening after she said Multiple Sclerosis. This is going to sound strange to some but I felt relief flood over my body. The relief was not because I was glad I had MS, because trust me when I say, I am not. No, the relief was because they found something. All my symptoms weren’t just all in my head or related to the grief I was feeling after my mother’s death. I actually had a diagnosis. I had a name for the demon I was up against and the demons’ name was Multiple Sclerosis.
I returned back to work. My co-workers and friends, who had been following my latest health battle and knew about my tests, asked me if I had any results. I was very upfront about the fact I had been diagnosed with MS. It is my understanding some people aren’t. The reactions I got were kind of mixed. One guy I worked with admitted he also had MS. He gave me a lot of helpful advice on what to expect, the medications, Doctors and what have you. The others, well, their reactions, at times, weren’t so helpful. Some of the other peoples’ reactions ranged from, “Oh is that all. You got lucky. to “May God have mercy on your soul.” A lot of these same people claimed to be related to or know someone who had Multiple Sclerosis.
In all of this, with the exception of the co-worker who suffered from MS too, I was surprised at how little a lot of these people offering advice and encouragement knew about Multiple Sclerosis. I was also surprised by how little I, as a nurse, knew about Multiple Sclerosis. I mean, in my nursing career, I had taken care of people with MS. However, they were admitted with other problems, such as chest pain, infection, preop for surgery. So the reason they were admitted was the primary diagnosis and Multiple Sclerosis would be the secondary to that. We would pay more attention to treating them for their primary complaint and, only address the MS if they were having problems. This might mean, if the person had problems with their gait and walking, we would note them as “Fall Risk” on the careplan and take appropriate steps to prevent any falls. Sad, but true.
Anyway, I believe knowledge is power so I set out to learn everything I could about this disease. You must study your enemy, learn everything about them before engaging them into a battle. Since I also have an older sister with MS, I started with her. I peppered her with so many questions during the first few months after my diagnosis, I think I almost drove her around the bend. I asked my doctor, my new neurologist, my nurse friends and the guy, who also had been diagnosed MS at work, all the questions I could think of. I also started searching the internet and reading any book or magazine article I could find on the subject. A few good internet sites I found are the National Multiple Sclerosis society or nationalmssociety.org and WebMD. The website for Cleveland Clinic and John Hopkins also has a lot of information about Multiple Sclerosis.
What I have found, from all my research, is in MS, the persons’ immune system actually attacks the central nervous system of their body. The central nervous system includes the brain, the spinal cord and the optic nerves of the eyes. The immune systems attacks the protective coating of the nerves known as myelin or myelin sheath, leaving the nerve exposed, like a naked wire. The body then tries to correct the damage it has caused by building scar tissue around the exposed nerve. The build up of scar tissue begins to interfere with the transmission of nerve impulses which causes the person’s symptoms. The damage to the nervous system can be seen on an MRI and are referred to as lesions. These lesions can occur anywhere in the central nervous system.
According the National MS Society’s website, there are 4 types of MS:
- Clinically isolated syndrome- the person has had one episode of MS like symptoms. If the person also has MS like lesions on the brain, they are believed to be highly likely to go on and develop the disease
- Relapsing Remittance- The most common form affecting over 80% of the people diagnosed with MS. It is characterized by periods of relapse, where the person’s symptoms become worse or they may develop new symptoms. These are followed by periods of Remission where the persons’ symptoms may completely disappear or lesson in severity. The persons’ symptoms depend on where the lesions are located and is caused by existing lesions becoming active again or the person developing new lesions. Each relapse a person has carries the risk of increasing loss of function and disability.
- Primary Progressive MS- In this type of MS, they don’t have relapses or they don’t have as many relapses. They is just a steady decline in neurological function and loss of function.
- Secondary Progressive MS- Anyone diagnosed with relapsing remittance is at risk for developing secondary progressive. It usually occurs 15-20 years after initial diagnosis. The relapses slow down or stop occurring all together. When the relapses do occur, they seem to last longer and there doesn’t seem to complete healing. There is a decline in the persons’ level of function.
Web MD also lists 4 types but instead of listing the clinically isolated syndrome, they list relapsing remittance, secondary progressive and then divide the progressive type of MS into two categories- the type that doesn’t have relapses. Whatever type you have, there is way more hope if you are diagnosed MS now, then if you were diagnosed even 30 years ago. If the person has RRMS, there are drugs on the market now to help the person from relapsing which helps the disease from progressing. These same drugs doesn’t really work for as well for progressive because they work to control the relapses. People with the progressive type don’t really have relapses. However, research is being done and there is hope of new drugs and treatments for progressive MS , as well as hope for a cure of this disease and a way to fix the damage it has done to the person’s body. And, oh before anyone comments about stem cell therapy, stem cell therapy is a treatment, not a cure. I have looked in to it. It cost 100.000 dollars, my insurance will not pay and it does not stop the Immune system from attacking the persons’ central nervous system. As of today, there is no cure.
Well, this post has went on long enough. I hope this has helped more people to understand a little about what Multiple Sclerosis is. Note: I am not a doctor. I am a nurse. I don’t think I know as much as a doctor. I hope it didn’t come off that way. Just passing along what I have learned so far. #WhatIsMS, #Preparingforbattle
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