Guest Post: MS Awareness 7/8

The next morning I received a visit from the staff neurologist who sat on the edge of my bed to tell me he knew what was wrong with me; he calmly told me all the tests confirmed a condition called Multiple Sclerosis. I then blew his mind when I in turn calmly told him that I was familiar with the disease as my father had it (he passed away in 2007 from heart failure unrelated to his MS) and my half-sister (my father’s daughter from his first marriage) has MS. I told him I knew what it was and I was just relieved it wasn’t a brain tumor or stroke (the two fears that had been plaguing me since the ambulance picked me up).

He let me know they’d begin intravenous high dose steroids, getting me a referral to the University of Florida’s neurology department, and providing me with a prescription for a medication I was to take daily via injection. Shortly after, a social worker from the hospital came to speak to me and she let me know my insurance might cover at home care for the remainder of time I needed the IV steroids. Lucky for me my insurance plan DOES cover that option and I was able to be released from the hospital on my third day. The remaining two days I needed the IV treatment, a nurse came to my home and administered everything. The medication was sent to my home same day via courier.

This began Hell Year. 2014 was nothing but back to back relapses and a rapid worsening of my condition. The medication prescribed wasn’t working and my new neurologist was trying to find something that would. I was out of work for over a month after I was released from the hospital and I spent most of that month taking IV and then oral steroids. I would wean off the steroids only to be hit again with worsening symptoms in a matter of days.

What began as vertigo and nystagmus quickly morphed into muscle spasms, muscle weakness, partial paralysis of my throat, jaw, and tongue, neuropathy in roughly 80% of my body, and chronic pain. I lost feeling in my hands and arms and had to re-teach myself how to write, type, and do basic tasks with my hands. To this day I only have partial feeling in my hands, neuropathy which will never go away.

A year and a half after my diagnosis I was on my second DMT and woke up one Saturday with no feeling below the waist. My wife had to carry me to the toilet, to the bathtub, had to bathe me. We had purchased a cane several months prior, but it wasn’t enough with no feeling in my lower body, so we bought a walker. It took five days of IV steroids and over five weeks of oral Prednisone before I arrived at my new normal, which is severe neuropathy in the left side of my body, especially my left leg and foot, and partial numbness in my feet and legs. I had to re-learn how to walk and still have to drive barefoot as I cannot safely feel the pedals if I have shoes on.

 

 

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