Denial Isn’t a River in Africa When You Hear the Words MS…

It’s an entire effing ocean.

Alphabet soup

When the episode of numbness and double vision I had in spring 2018 landed me in the hospital, they ran so many tests & diagnostics it was like alphabet soup on my chart:

Brain MRI with and without contrast

Cervical and Thoracic MRIs with and without contrast

TB

TB of the spine (bc that’s a thing apparently)

Lyme

NMO

APTT

Lupus

Vitamin D

Vitamin B12

CBC (daily)

Protime-INR

Troponin I

Phosphorus

Magnesium

CT

POCT

Protein CSF

Angiotensin Converting Enzyme CSF

Toxoplasma PCR

CSF IGG

CSF Albumin

CSF Cell Count w Diff

No joke, I copied those all from my chart, and that’s not even the whole list, and doesn’t count how many times different tests were done – because, you know, a lumbar puncture is SO much fun they had me do it TWICE.

A lonely, scary night

I literally have no idea what most of these tests are – but at the time what all these letters spelled was HOPE.

You see, after I first arrived at the ER, a neurology resident (hi, Dr. Coleman) did some physical evaluations and had them perform my first MRI (more on that later). After a long, lonely and scary night in the ER, Dr. Coleman came and told me as nicely as he could that he “suspected MS” but that there were many things it could be so they had to run a bajillion tests. I think he actually did say bajillion. Yep.

Now, when he said “MS” he did so matter of factly like I should know what that meant. Umm, yeah, not so much. I had certainly HEARD of MS and in the vague recesses of my mind I thought I remembered that when I was a teen or in my 20s, Richard Pryor had MS. I also vaguely – enough to scare myself stupid – remembered he’d been in a wheelchair or had some physical impairment.

Praying to the gods

So, every time someone drew blood, or when Dr. Coleman performed my first lumbar puncture right there in the ER bay, I crossed my fingers and toes as much as I could (by this point my whole left side was numb shoulder to toes) and prayed to the gods that it would turn out to be high blood pressure. Or diabetes. Yes, I could deal with diabetes. I mean, if Bill Clinton could become a vegan after his heart bypass, I could surely conquer diabetes.

When I was laying in a hospital bed getting IV steroids for 3 days, I even sorta hoped it was a mild stroke. Not like one that would leave my face permanently droopy, or make me have to take speech therapy. But one that could be gotten over with some physical therapy.

Weird Southern Virus?

After my 2nd set of MRIS and 2nd lumbar puncture, I prayed for a pinched nerve. I even prayed for an easily removable tumor. Since I’d not had symptoms before moving to North Carolina, I even made up a condition I like to call Weird Southern Virus, or WSV.

Even after I was released from the hospital, still without a “definitive” MS diagnosis I held out hope. I mean, I read online that a B6 deficiency presents with the EXACT same symptoms as MS. No, I didn’t read that on WebMD. Also, last Christmas my pup, Bridget, had tested positive for Lyme exposure. And I was convinced her flea meds or some pest spraying had exposed me, temporarily, to neurotoxins.

The very last test

I held out hope until the VERY last test came in, on May 9.

God%#!#it, I do have MS.

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Comments

View Comments (4)
  • AFancyA
    4 weeks ago

    Hi mominprogress

    I also had to endure 2 LPs. They were a year apart. Still equally scary, to say the least. The whole process is… excruciating both to the mind and body. I had it for years but was diagnosed over a year ago. I have found strength in reading everyone’s posts here. I started to experience depression about 7 months ago. I found this site yesterday by searching “MS stories”. I just wanted to see if maybe i was misdiagnosed… to see it what I feel is not normal for people with MS. Sure enough we are all different but the same. I dont feel crazy or alone now.

    Thanks for sharing your story.

  • Donna Steigleder moderator
    4 weeks ago

    AFancyA,
    Glad you found our site and hope you come back often. What you have discovered is true, MS is different in how it presents in almost everyone so what is “normal” for one may be different for another but still normal. What’s “normal” is truly specific to the individual and to their unique medical history and personal situation but you’ll find that the MS world has many similarities to share and is a great support network. Please come back anytime you need to share and find additional resources. Donna Steigleder Moderator multiplesclerosis.net

  • Kathy
    2 months ago

    Hi mominprogress! just wanted to let you know I really enjoyed this post. And TB of the spine is possible. It has been cultured from bone before in the lab I worked in.

  • Erin Rush moderator
    2 months ago

    Hi MominProgress! I found your writing to be compelling and moving. And let me just say that I am sorry that you had to endure TWO lumbar punctures! Ouch!

    I think many of our community members can relate to your desire for your diagnosis to be something besides MS. While I am glad you finally received a definitive diagnosis, I am so sorry it was, indeed, Multiple Sclerosis.

    Thank you for sharing your humor and writing savvy with our community. Don’t hesitate to share your thoughts anytime!

    Best, Erin, MultipleSclerosis.net Team Member.

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