Time and Space

It started with a numb spot on the bottom of my foot, about the size of a quarter. Normally, I don’t run to the doctor for every little thing, but the spot worried me and I made an appointment with my GP. And the diagnosis circus began…

GP said it was neuropathy and gave me Gabapentin. Didn’t help. Numb feeling crept upwards, into my legs and left hand.

Neurologist 1 – Vitamin D deficiency. Took lots of D. Got worse.

Neurologist 2 – Carpel Tunnel Syndrome. Bought a brace for my hand. Got worse.

Neurologist 3 – First MRI. MS or tumor C1-3. Retest in 6 months. Tumor? Six months? I moved on.

Neurologist 4 – Transverse Myelitis or possible tumor, referred to surgeon who did a resection. The tissue sample was inconclusive but he thought it looked like Neurosarcoidosis. The headaches started and he said there was no more he could do for me.

Neurologist 5 – It took her four visits to understand that the lesions are inside my spinal cord. Ugh. Getting nowhere. By this point I’m using a cane. I’ve since graduated to a walker.

Neurologist 6 – Mayo. Decided to go to the “big boys.” Surely Mayo would be able to figure this out. I was handed over to the MS Neurologist’s Fellow who did his best. He diagnosed MS due to O-bands.

Neurologist 7 – Mayo. the Fellowship was over so I finally got to see the MS doc who does not believe I have MS and agrees with the Neurosarcoidosis diagnosis, but without a good tissue sample, it’s a guess. I can’t help but think I wasted a year and a whole lot of Tecfidera for nothing.

In between these visits there were MRI’s, spinal taps, evoked potentials, ophthalmologists, urologists, physical and occupational therapists, phlebologists. I’ve learned to read an MRI, I know what IgG and CFR stand for, I understand the “time and space” concept, but I am no closer to an answer than I was when this started.

I’ve read the average MS patient will be misdiagnosed five times before getting a verified MS diagnosis. I don’t blame the doctors for this – CNS diseases are tough to diagnose. I do loathe the time wasted, the lack of urgency, the endless testing. As a person who was healthy for the first 54 years of life, I had a lot to learn about the health care system; how to be patient, deal with insurance companies, and most importantly for me… how to stop freaking out with every new symptom. I guess it’s called acceptance, this road. It’s been a long one.

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