Trying To Understand Your New Diagnosis

Being diagnosed with MS is not only one of the scariest things someone may ever go through but the process is extremely annoying. My neurologist told me to think of the process as court, innocent until proven guilty. We had to rule every other possible diagnoses out before it is officially diagnosed as Multiple Sclerosis. At this time, there are no symptoms, laboratory tests, or physical findings, that can by themselves determine if someone has MS. In order for a doctor to make an MS diagnosis, they must meet this criteria:

  • Find evidence of damage in at least two separate areas of the central nervous system, which includes the brain, spinal cord and optic nerves (can be seen on MRI)
  • Patient must have at least 2 attacks lasting at least 24 hours and separated by at least a month
  • Rule out all other possible diagnoses

I remember thinking "so you people think I have MS but you can't diagnose me with it because I only saw double for 6 weeks once? Now I have to just wait until something else happens?" I had another flare up shortly after my first which affected my eyes again so my doctors were able to officially diagnosis me with MS in February 2014, even though my symptoms first started August of 2013. 

Some diagnoses that will be ruled out are:

  • Lupus
  • Lyme Disease
  • Stroke
  • Fibromyalgia

After getting told that you don't have any of the other diagnoses, and you've seen the plaques on your MRI, and you've had two attacks (or more,) your doctor can say those dreaded words "you have officially been diagnosed with Multiple Sclerosis." For me it was kind of a sigh of relief "finally we can say what we all have thought for months" but then all of these questions pop into your head:

  1. How did I get MS?
    • Anyone can, it is usually diagnosed in your 20s and 30s, it is more common in women, more common in temperate climates (United States, Canada, Europe)
  2. How is MS treated?
    • No cure but there are therapies and medicines that can slow progression and help control symptoms
  3. Will my MS ever go away?
    • No, it is a lifelong disease
  4. What are the common symptoms of MS?
    • Tingling, Numbness, Loss of Balance, Weakness, Blurred or Double Vision, Fatigue, etc.

Everyone's MS is different, it isn't a textbook disease where we all have the same symptoms and outcomes. So far the only symptoms I've really experienced are fatigue, dizziness/vertigo, and double vision. I have a good friend with MS and her first symptoms were numbness and sharp pains in her legs. A piece of very important advice I have for you is to NOT get online and start looking at videos of MS bedridden patients. I had a few friends find a video of a lady with MS who was in a wheelchair and had to have a monkey take care of her (feed her, help her drink, help her take her medicine, etc.) This was just a few short weeks after my diagnosis and I was certain I was going to need a monkey by the end of the year. But hey, look! I really am fine and am without monkey. Our symptoms and bodies are all so different that you can't look at someone's MS journey and think yours is going to be the exact same.