It’s no secret that I have multiple sclerosis. For those of you unfamiliar with this condition, the nervous system of the individual attacks the lining (myelin sheath) of their nerves. Have you ever tried to charge your phone with a power cord with an area of the wires exposed? It shorts out a lot so you have to fiddle with it to get it to actually charge. That’s how my nerves work. Certain nerves in my body are just not sending the signal properly. They call MS the snowflake disease because no one has all their lesions in the exact same locations as someone else so each person is uniquely affected. This diagnosis does not define me, but it does have quite an effect on my daily life so I thought I would share my story.
I’m not exactly sure when it began to be honest. It’s possible it was lurking for years before insisting that I pay it more attention or it could truly be a recent development. Either way, it started tapping my shoulder around the beginning of 2016. I’ve always had migraines, but they were monthly & predictable. They rapidly increased in both frequency & intensity until I was having a pretty good one daily. My Dr., thinking it was hormonal, ordered a hysterectomy. This was THE BEST mistake ever!!! I did not miss my cycle at all, but it didn’t help the migraines.
I was given a referral to a neurologist and, a few months later, (who knew neurologists were so hard to book???) she looked at me for 5 minutes & decided it was occipital neuralgia. This Dr. referred me to physical therapy as well as a pain clinic, but the pain clinic was going to take several months to get into. I did physical therapy for a bit where they gave me neck exercises to do & massaged my occipital nerves (where the skull meets your neck), but it didn’t really do much & I started having other issues. I never heard from that neurologist again.
I found myself at work one day slurring my words. I shrugged it off and decided my headache must be worse than I thought & I would nap when I got home so I pushed through. A couple hours later I was staring at the computer screen. What was I typing? Oh crap! How do I type??? By the time I would remember the word, I couldn’t figure out how to get it on the screen. Once I figured out what a keyboard was, I couldn’t remember what word I needed to type. It took me a ridiculous amount of time to type a 3 sentence email to our district manager & I can only hope it made sense. I think that’s the point where I started to think that maybe there was something really wrong.
Are you still reading this? Wow! The next part is where the fun really begins. I started my weekly rounds of what I called “Russian roulette”. For those of you still interested in reading my ramblings about my journey to diagnosis, you can find out more in my next post. Thanks for following along!
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