Living with NMOSD for 40 years

Last updated: April 2022

Hi, I have NMOSD.

Am 56 and live near Toronto, Ontario in Canada. I was diagnosed with MS in 1979 at age 14. That was revised to NMOSD in 2018. I had the usual progression of NMOSD, which was unusual for MS, but not distinguished at the time: slight tingling and numbing in my little finger on left hand, a small spot in my vision, some eye pain, etc.

Motorcycle accident triggered it all

Symptoms slowly progressed for two or three years and then quickly cascaded within a year after having a motorcycle accident at age 17, (just banged up and s broken leg). The disease caused both my legs to become paralyzed, severe vision in both eyes loss and pretty much blind in my left eye. Both legs came back after a couple of months and my vision improved a bit.

MS symptoms, relapses, no answers

Then came an extreme long-lasting headache and my left side became paralyzed and has stayed that way ever since. In other words, it was the typical disease path for this. I eventually ended up using a wheelchair for about eight and a half years, tried university but kept having relapses, and dropped out a few times.

Re-learning how to walk

Then I got a little better, worked very hard for two years just practicing standing up and sitting down, as little at first, and then for hours on end. Then practicing stepping up one step at a time and then stepping down again for hours every day. Then I used a stepping machine for hours each day until I wore it out completely. All the while doing two hours of simple floor exercises every day and practicing walking with a cane a little every day.

Moving forward with life

Then I took a certificate program in Spanish language for a year at a community college to practice walking with a backpack a couple of days a week. Once Strong and confident I went back to university and graduated in 1996 with a double honours (that's how we spell it in Canada). in Economics & Political Science. Then I moved on my own to Toronto, still half-paralyzed, half-blind snd walking with a cane, and went to law school. I graduated in 2003 with a J.D. and started working in the financial services industry doing regulatory compliance and business law. Along the way I met my spouse in 2000. Now I am an executive at a wealth management company and father of a very active little boy.

Ignoring symptoms because no treatments

But now I am more than half-blind and probably legally blind, and I don't walk as well with the cane. I ignored my MS while finishing university and going to law school because there was no treatment then for my secondary progressive MS. Then I in 2018 there was finally the first treatment - Siponomod. I hooked up with my local MS clinic in Toronto to hoping to get a prescription.

Finally... years later receiving the diagnosis

However, my new neurologist thought my disease progression didn't look like MS. That was the first time I had heard of NMOSD. I did some MRIs and was tested for Aqp4 and MOG antibodies. The MRI confirmed it wasn't MS, and the testing was negative for MOG and NMO, so I have double seronegative NMOSD, but with only asymmetrical or partial transverse myelitis, which puts me in a very rare segment of NMOSD.

Anyway, that's me. I've had NMOSD for over 40 years now to but it's still new to me.

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