11 months in...

I’ve learned to take more than a few punches over the last couple of years.

And a phone call the morning of July 26, 2019 was one of the hardest ones yet.

I write about most things… but a few of life’s turns have been either too big, or too painful to talk about lately.

There is a moment when you get bad news where the world stops, everything crashes down around you, and you can’t fathom or see a path forward. It feels life is over, and in that moment, you see a future you thought you had imploding and not much else. 

Being told I had multiple sclerosis (MS) initially felt like I had a gun to my head, and I didn’t know when it was going to go off. MS really doesn’t work like that, but it is a chronic, degenerative, incurable disease that is entirely unique to everyone that has it.

MS is an autoimmune disease, and along the AI spectrum of conditions, I would put it on the least fun end.

One of the short straws in the autoimmune world, if you will.

MS has the ability to rob people of their mobility, speech, independence and much more and the decline can come without warning.

The day I got the call – full disclosure – I had a full-blown pity party. Small, soggy, sad piñata and all.

And then I got to work.

I am a health nut, and was before diagnosis (hello double edge-sword, because yet here we are still in spite of all that).

But that also meant I had enough knowledge to get up to speed quickly on the actions that were in my control to shunt my own progression.

I’ve spent nearly the last year settling into a new normal, with the number one priority being my health and healing.

I’ve read only books by doctors who have MS or who have other autoimmune diseases. I even flew to New Jersey to meet with one in person. Until now, I’ve been very private about all of this, and only close friends and family know for the most part. But I am finally ready to talk about it now.

MS is a drug-managed disease, and at this time, I’ve declined all drug treatment, managing through diet and lifestyle instead.

Here is how that’s gone over the first 11 months.

July 2019 Spine

The area of concern was the angular and oval shaped area in my spinal cord, near the mouse arrow and C1 vertebrae. My neurologist said it was a fairly large lesion for how few symptoms I was having.

July 2019 Brain

The is the same look at a lesion, just at different layers within the brain tissue. The left picture is more the more topical of the two, and the picture on the right is a “deeper” look inside my brain, if you will. The fact that the lesion is present deeper in the brain tissue means it had the potential to cause more issues.

June 2020 Spine

The lesion in my spinal column has mostly resolved, with a bit of cloudiness still remaining. I may have this for some time, but my hope is that it continues to improve.

June 2020 Brain

The particularly large lesion on the right side of my brain from back in July of 2019 is largely gone within multiple layers of brain matter.

MRI’s can be a bit difficult to read, but this shows, what I believe to be some pretty major improvements in a relatively short amount of time.

I make my neurologists very nervous and they don’t generally support what I’m doing. But, one of them did say at my nearly one-year follow up appointment, that if I make it another year without any advancing lesions, I will be ‘statistically significant’ among the overall MS population. To me, that means a year one progress report that so far, I’m kicking MS’s ass.

I don’t know what the future holds, but it will at least be interesting and I’m going to talk about it here.