Making Sense of the Different Types of MS
Do You Have Any Questions?
I remember my first follow up visit after being told my diagnosis of MS was confirmed, only slightly and I remember entering the office with conviction. I wanted to know what we were going to do about all of this. “Now,” I said to myself. “We will get down to brass tacks and handle this.”
My neurologist was kind, patient and open to welcoming me into the fold in any manner that seemed best for me. It did not matter. I felt overwhelmed, and my mind was racing.
I recall explanations of the myriad of symptoms and issues I may experience. There was a brief discussion of medications to be considered and specialists (I’d never even heard of) that I might need to see.
I was given a review of my brain MRI. I gazed at the gray image full of dots and blobs as my doctor’s mouse arrow zipped from one area to another. This experience seemed more like I was being briefed on maneuvers for interstellar space battle than reviewing my current state of health.
In the midst of all of this, I took part in what felt a bit like a cross between a sobriety test and a kindergarten game. With arms outstretched, I found my nose, I patted my thighs and touched finger-tip to finger-tip. Then I was off to walk "the neurologists’ catwalk," down the hall and back, to check my stride and time.
I left trying to recall all the terms and phrases I had just been introduced to. I tried to remember something about the kind of MS I had.
My doctor had undoubtedly gone over this many times, calmly and plainly. I knew it was something with words starting with the letter "R”. Well, there was plenty of reading material tucked under my arm that would explain it all again. I was in a fog. I could not this blame it on MS directly.
This was just a lot to process.
When I returned home, I stared at the packets of material on my kitchen table. “How much did I really want to know about MS,” I wondered? “Well,” I decided. “If MS is going to be a part of me, I am going to have to get to know it.”
I took a deep breath. I was afraid for my future, however, burying my head in the sand was not the answer. It was time to figure out where I was at in all of this.
Like so many of us MSers, by the time we are diagnosed we are briefed pretty well on what MS is a disease. What I wanted to do was to break down the terminologies so I could better understand the course of the disease and how I related to it all.
If you find yourself experiencing a new symptom or one or more old symptoms worsens or returns for at least 24 hours, this is known as an MS relapse. I was happy to learn that relapses are also called flare-ups, exacerbations or attacks.
The fact that all these words are somewhat interchangeable cleared lots of confusion right off my plate. These words are thrown around quite a bit in our world, and as a newcomer, I wasn’t sure about what they all meant.
Primarily, relapses are identified as such when they occur 30 days after any previous relapse. They can last anywhere from 24 hours to a few days, weeks or months. Relapses can have multiple symptoms with different levels of severity. They can be subtle, or they can be extreme, severely affecting daily activity.
In regards to MS, the word remission refers to a period where a person goes symptom-free or returns to the state of health they were in before the last relapse.
A remission can last for weeks, months, or even years. Unlike the use of the word remission in other maladies, the word remission never means MS has gone away, or there are no signs of it in the body. MS is a lifelong disease.
Longevity and Permanence
With the more frequently used terms identified and defined, it was time to take a look at the stages or types of MS. Upon first glance; the definitions were dizzying.
I got caught in a loop of reading and re-reading things like:
- Symptoms flare up and eventually go away then come back again, or never come back again
- New symptoms flare up; old symptoms get worse or better
- Old symptom flare up and never seem to go away
- Symptoms stay and only get worse over time, with no break
It is no wonder there are a lot of questions about the progression of MS and what it all means to us.
I felt at this point that I had given myself enough of an education to where I could ease back a bit. Even though I had a better understanding of the nature of the main types and phases of MS, the best I could do now was to keep records of my relapses, symptoms, and remissions.
The more organized the information I could share with my neurologist, the better chance of suppressing progression while at the same time, improving the quality of my days. There is no way to know where MS is going, but at least now, even the surprises will not be as ‘surprising.'
The next item on my agenda was to relax a bit when reviewing my MRI scans. I wanted to understand what these images indicated, and I wanted to follow my doctors mouse-arrow across the images because they were maps for handling my health – and not maps for the intergalactic warfare they did resemble.
I am still working on this.