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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • joannmaxwell
    3 years ago

    Boy I hear you about this diagnosis. I was 60 years old before I was diagnosed. Before that I had gone to numerous chiropractors, naturalpaths, general practitioners, physical therapists, and on and on. I got my diagnosis, I first neurologist was pretty sure by my history that i have had it for 30 years. My symptoms leading up to the diagnoses were not very acute, but now I’m in the secondary progressive stage. I’ve started taking Ampyra which seems to be helping with my walking and my weak hand. It is frustrating out there, with so many other symptoms that lineup with other diseases. Although I’m not happy that I have MS, I’m glad that at least now I have a diagnosis. It’s a catch 22.

  • AllisonJo author
    3 years ago

    Isn’t it funny that we are somewhat relieved to hear that we have MS? Nothing is worse than not knowing. The mistake I made was thinking that now I finally had a diagnosis, it could be “fixed”. You and I know better than that. The journey changes courses, but still, it is a long road, jmaxwell. I’m glad the Ampyra is helping you. Success with any medication is a win and I hope there are more wins than losses in your future. I am an older MSer as well. Almost 59. Grateful that it didn’t hit me in my younger years when there were kids to raise. Allison

  • tfs
    3 years ago

    Very good, AllisonJo. Acceptance. Very good topic of itself.

  • AllisonJo author
    3 years ago

    Thank you, tfs 🙂

  • DonnaFA moderator
    3 years ago

    Hi AllisonJo, and thanks for sharing your story. I’m sorry to hear that you’ve had so much trouble finding answers.

    I know that we’ve chatted before, but I don’t remember if we’ve shared the link to find a doctor. And I know that we’ve chatted about acceptance because your lovely story, Acceptance vs Giving In, is on that I love to share.

    You’re in our thoughts, and we’re wishing you answers. -All Best, Donna ( team)

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