Pandemic. Moving. And a Diagnosis.
Last updated: December 2021
It's March 2020, my friend wins a trip to Mexico. Her husband can’t go, so I’m next in line! We get off the plane in Mexico to multiple texts telling us to come home. 72 hours later we board a flight home. Two weeks of quarantining and planning for online learning was a lot. Also listening to my upstairs neighbour's kids all day was a lot.
So I decided to move
In May I started to feel pain shooting down and up my right leg. I would have about 30 debilitating episodes a day lasting 30-45 seconds. Then, I couldn’t feel anything on the top of my shin. So off to the doctors. I was immediately sent for an MRI, but they forgot to add the contrast dye. So another one is ordered. Small lesions are noted.
New beginnings and new symptoms
Come June, I started my Principal Qualification Course. I started to feel numbness and tingling, then a “dead feeling” in my right arm. Again I could not feel anything when something was touching my arm. My doctor refers me to a Neurologist.
As life progressed, the issues did too
I sold my condo. Starting July I still had consistent shooting pain in my leg. A dead feeling in my arm. And then …. Loss of vision in my right eye. It started on a Monday and it was completely gone by the Wednesday. By Friday I saw an ophthalmologist and by the following Tuesday I had my third MRI. The Ophthalmologist thought that I had Optic Neuritis but was going to hold off doing anything until I saw the Neurologist.
As goals came to an end, the real results came in
I finished my course and bought a townhouse. August I saw the neurologist who diagnosed me with MS. I was given high-dose prednisone for 5 days and then tapered down for 12 days. He also sent me for a spinal tap to confirm the MS diagnosis. Spinal tap was done and 10 days of severe headaches (anytime I tried to sit up) the results came back. Negative for MS. I was referred to St. Michael’s Hospital in Toronto Ontario Canada to the MS Clinic.
My friends packed up my condo...
September 9th 2021 after 5 months of debilitating nerve pain in my right leg, a dead feeling in my right arm and the permanent loss of vision in my right eye, I was finally given the diagnose of Neuromyelitis Optica. I was hospitalized for two week for plasmapheresis treatments and placed on high-dose prednisone. My friends moved me while I was in the hospital. This kicked off a really stressful year of trying to get me into remission (if that is possible) and to prevent me from losing my eyesight in my left eye.
The following things happened:
-13 months of high dose prednisone and 50 pounds gained.
-Start CellCept but need to stop because of poor kidney function and a referral to a nephrologist.
-A trip to the cardiologist because of another medication I am on.
-Starting infusions of Rituximab.
I have finally come out the other side
My leg and arm pain is gone. But my optic nerve is completely dead, so I have limited to no vision in my right eye. All I can do is to continue to build my strength mentally and physically, take my meds, and look on the bright side; because don’t know what is going to happen in the future and I can’t worry about it. So I am living my new life to the fullest.
Help others feel a little less alone
Typically, how much time passes between attacks for you?