MS- the short version…

*note- I am not a doctor but I do have a level of expertise on this subject. I was diagnosed with MS in 1998 and my husband was diagnosed in 2000. It’s how we met (a great story for another post). What we have looks very different but the underlying function and treatments are the same…this is just the beginning of this discussion- PLEASE ask questions
  Multiple Sclerosis (MS) is a catch all category for a type of immune system freak out. Our central nervous system runs on electricity. Wires have insulation to help with electrical transmission. Nerves have insulation too-called myelin. When insulation is damaged, circuits (and nerves) short out and may not work in the way expected.

Imagine if my cat chewed through the insulation on the wire going to a lamp. The light may or may not turn on. It may act in unexpected or unpredictable ways. With MS- it’s Russian roulette as to where the immune system decides to snack. Anywhere in the central nervous system (brain or spinal cord) is fair game.   They don’t know what causes the disease in the first place (genetic precursors? Mono?)  but there are a few key factors that may cause the immune system to make lunch of the nerves. Stress, overexertion, overheating and illness (a major immune system response) can cause an exacerbation- an active period of damage. Exacerbations are periods of greater symptom severity.

There’s no one test but neurologists usually rely on MRIs (looking for white spots that indicate scars) and spinal taps. The spinal tap (painful and, in my case inconclusive) look for proteins that are crumbs left over from the myelin lunch.

There are a few possible treatments- most of them are decoys for the immune system to attack..

So back to my (our) experience with MS… symptoms are many and vary greatly from person to person. For me- it started as burning numbness  (think of a bad sunburn and wearing sandpaper shoes) on my feet and legs (I broke a toe and didn’t feel the scrape on my skin). My dis-ease progressed over time and then the pain got worse to the point of interfering with sleep (and then stopped me from walking) and then  extreme fatigue joined the mix.
As for my husband- he first noticed a blind spot- his whole left field of vision went missing for a bit. MS likes to snack on the optic nerve (thank God that bundle of nerves can regenerate to a point). His balance “takes vacations” and his falls are dramatic. He also has more brain damage than I and can no longer be the ecosystem restoration engineer he once was.

Now, for me, 15 years later, some memory issues, painful stabbing, balance malfunctions and heat caused confusion has taken me out of the classroom. Or rather- I chose to leave teaching because I refuse to put my “at-risk” at further risk. And I can’t fight through the fatigue anymore.

What Dan and I have looks very different but there’s an understanding that is priceless. We have challenges to spare but we have love and faith in equal measure. We are starting a new chapter. One focused on first healing ourselves and then helping others to do the same.

Ask questions. This is just my experience. Everyone is different. I will help, if I can.
With Love, Light and Blessings-

Suz & Dan

Helpful sites:
MS Association of America
National MS Society


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