While all manifestations of sarcoidosis can causes physical symptoms, neurosarcoidosis in particular can come with serious mobility challenges. Mark Taylor is a neurosarcoidosis patient from New Zealand who is overcoming the challenges of neurosarcoidosis to raise money for a good cause. Mark plans to swim the Auckland Harbour in April 2019 to raise money for the medical institutions that helped him find answers when he was faced with a medical mystery and to help advance research on neurological diseases like neurosarcoidosis. Read his #SarcoidStory below and check out his fundraising page. 

If you’d like to create a fundraiser page similar to Mark’s, you can do so on our free and easy-to-use Team KISS fundraising platform!

I’m 45 with a degenerative disease causing blindness and I can barely walk, but I’m swimming across Auckland Harbour in April 2019.

Mark Taylor

Neurosarcoidosis patient

Hi there, my name is Mark Taylor and I’ve been living with a neurological disorder for the past sixteen years.

The neurological disorder I have is called neurosarcoidosis, which is an inflammatory disease of the central nervous system. Neurosarcoidosis is a rare condition and the way it has attacked myself is rarer still.

I was 29 years old when I noticed the first symptoms. However, I didn’t take notice of the first signs as I believed the pain behind my eye was sinus pain. It was not until a couple months later in the month of February that things took a worse turn.

My brother and myself were down at the farm cutting fire wood when I stopped to rub the sweat out of my right eye. As I was doing this I noticed that I couldn’t see out of my left eye. I asked my brother if there was something in my left eye, of course there wasn’t, just the normal pain that I had since December.

The next morning I still couldn’t see out of my left eye and the pain had got worse. Five minutes with my local GP and I was sent to the eye doctors at Auckland hospital. After progressing through the hospitals protocols and finally the Consultants I was diagnosed with Optic Neuritis. Optic Neuritis is the swelling of the Optic Nerve and is a common symptom of the disease Multiple Sclerosis.

I remember the Consultant stating that I have Optic Neuritis which we will treat with a treatment of IV steroids and we may see you in another 12 months or longer with another episode. However, I had another eight attacks within eight months and lost the sight in my left eye in the month of October. After the second or third attack the Doctors changed the diagnosis to Steroid Responsive Optic Neuropathy (fancy way of saying I don’t know).

Directly after the damaged was done to the left optic nerve, it started on the right side. With a number of different treatments we were able to maintain sight in the right eye for approximately two years.

So now I’m 35 years old and I’m lying in a hospital bed with no movement in both legs and the strength of my right arm has been significantly reduced. This is a result of the neurosarcoidosis affecting my brain and spinal cord. Above, I mentioned that the condition is rare and how it has affected me is rarer still. That’s because generally neurosarcoid does not affect the spinal cord.

After spending three weeks in Auckland hospital stabilising and five weeks at Middlemore Rehab learning to walk again with the assistance of a walking stick, I’m able to continue with my life. However, you can imagine it is a little more difficult than previously. Even I can walk of some fashion, technically I’m a paraplegic with no eyes. A little worse than the character in the movie Blind Fury.

An actual diagnosis of my condition was made after six years from my initial visit to Auckland hospital. That is why I’m attempting to complete the 2019 Auckland Harbour Crossing swim as a fundraising event for Neurological Research. It would be great to assist in the learning of neurological diseases and hopefully to prevent others from suffering disabilities such as mine.

 

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