My MS Journey
My official MS diagnosis came in April 2006. Although my first major MS symptom was optic neuritis in October 2005. (That is the date that I go with for my MS diagnosis.) Prior to that, I had little instances which I can now equate with MS. Walking UP (what??)😞 the stairs from a New York City subway, I fell 2 times. I didn’t think anything of it, maybe I just tripped.
My right eye was blurry
I woke up one morning and my right eye was blurry. I kept rubbing my eyes thinking there was still sleep in my eye. However, when it didn’t clear up I want to see an ophthalmologist. After dilating my eyes, nothing was wrong with my retina or my cornea, I thought everything was fine. Then my ophthalmologist, suggested I see a neurologist. My eye was still blurry but my other eye was perfectly fine so I continue to drive back-and-forth to work.
My neurologist was fantastic. He was a doctor for one of the nurses in my ophthalmologist office. She had epilepsy. I went to his office and he showed me the model of the brain. He pointed out the optic nerve and explained to me that the nerve must’ve caught a cold or it might be MS.
My neurologist suggested a spinal tap
After a battery of tests, including visual field, he suggested a spinal tap. He explained that the spinal tap, if negative I could still have MS. However, if it was positive, I definitely had MS. After sneaking and seeing the needle was almost 8 inches long, I laid down and had my spinal tap.
Eight vials of spinal fluid later, it came back positive for MS.
I had my first MRI where he found five lesions on my brain. I was prescribed prednisone to clear up my optic neuritis and then he started me on a DMT, Avonex.
Several lesions on my spinal column
My subsequent MRIs were all the same. I had no additional lesions and I thought I was doing well. In 2013 I had an MRI, and for the first time, an MRI on my cervical spine. My neurologist found several lesions on my spinal column and changed my DMT to Rebif. He then informed me he would be retiring. He made sure I had copies of my medical records to give to my new neurologist. I was very saddened and disappointed. However, I found a new neurologist that I love as much as him.
Each of my subsequent MRIs showed no additional damage and no additional lesions, everything was the same. As a result my neurologist considers me stable, but I noticed my disability was worsening!!!
FMLA and rapid decline
I was still working every day. My walking and my standing for long periods of time were worsening. I drove back-and-forth to work every day and I think that that helped me to maintain my mobility. However, my boss at work saw things differently. I was challenged. He put me on FMLA and because of this, I feel I declined more rapidly. (I never had any direct conversation with him, as a result, it left me very angry.)
Uncontrollable spasticity and spasms
I continued with my physical therapy. And it seemed to help for a while. Now, I am using a cane and a walker. Lately my spasticity and spasms have become uncontrollable, and my neurologist wants me to have another MRI. I am sure the humidity and alternating hot weather in the Mid Atlantic region are not helping me.
I try to remain positive, but when you have painful nocturnal spasticity and spasms at night, sometimes it’s hard. I can say, is thank God for MultipleSclerosis.net.
The journey is not yet over!!
Thank you for reading my story, and let me know yours🥰🥰
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