I Must Have a Special MS

It's been 9 years since my diagnosis. It's been way longer than that since I've had MS, which I'm sure most of us would agree that we've had MS way before we were diagnosed. The weird symptoms, the fatigue, the stuff that came and went just as fast until you couldn't ignore it any longer, and then came the journey of what is happening to me, just to be dismissed as it being nothing, or you're a hypochondriac, or the one I love the most saying, you are making it up.

How my journey started

I started that journey of finding out what is going on with my body in my mid-30s (mind you, I could go back a decade and remember things that were off) and finally got diagnosed in my late 40s. I had all the emotions: relief, anger, grief, pity, and denial for years. Here's where my MS gets "special", I hear this magical unicorn phrase of "I'm in a remission" or "how many times are you in a remission vs relapse" (love those surveys). I guess earlier in life I could tell you (if I had been diagnosed then), but now I have no idea, or at least my "remissions" are few and far between. I was diagnosed with RRMS in 2016, and then a new doctor diagnosed me with PPMS in 2019. I disagree with that diagnosis since I know I've had MS for a long time, it just wouldn't rear its ugly head as often, so SPMS just makes more sense, but really tomato/tomato. To me, they are kind of the same, once you hit that point.

How my journey differs

Here is where I think I have a "special" kind of MS. I have these days, 2-4 days every 3 to 4 months, where I have almost ZERO pain...ZERO! I don't have any weird tingling, ant crawling, cog fog, ataxia, leg drag...all the fun MS stuff we go through. It only lasts 2-4 days, and those days are glorious! I literally dance around, ride my bike, and walk my dog! 2-4 days of me not going "oh that hurts" or "dang I'm glad I caught myself before I fell" or "I wish I could still be working" or having so much cog fog I don't remember what I did that day or can carry out a conversation longer than 30 minutes without my brain shutting down. If I could do cartwheels, I would!

Can anyone relate

Am I the only one like this or do I have a special type of MS? I just started listening and researching MS again and just in the past couple of years a lot of stuff has come to light and the McDonald criteria has even changed (again) at least according to MS Doc, Aaron Boster. There is still so much they do not know about our disease but I do believe one day they will and will at least be able to diagnose faster. The days that are very far and few between that I feel "normal" remind me of my past life and bring such joy to me and I will take it, but am I the only one going through this type of MS "relief"? I hope life is treating you gentle today. Thanks for hanging out with me,
Kimberly