Thursday, January 5, 2012

With Regrets to my Corpus Callosum and Cerebral Spinal Fluid

I let hope dig its hairy roots into my brain and by last night was entertaining dreams of having my career back, bicycling to work, finally walking the Portland Marathon-the goal I was working toward when I first had symptoms, and planting flowers throughout the endless horizon of possibility that is life as a 46 year old woman without MS. I am teeth grindingly blindly angry and sad-achingly bone throbbing sad to let those thoughts dance around.
Let me back up. My story. My MS story is one long slog through tests, doctors, and diagnoses while also shadowed by faceless bureaucrats who have the power to take away my income and insurance based on one doctor's note. About five years ago the Oregon MS guru and my local neuro had a side conversation and decided I have Conversion Disorder. As if this were some unmentionable, leper-like condition these-two 'men' didn't bother to discuss this with us directly. They left us to find out on our own. Cancelled critical meds, lots or research, a new neuro, neuro psych testing, and the support of family, friends and my counselor: conversion disorder was ruled out-MS of a secondary progressive nature settled in as my diagnosis.
What no one seems to understand is how heart wrenching, dream shredding, world upending it is to have Conversion Disorder bandied about. If you haven't figured it out, I'll ask you to read this in a loud voice, yelling angrily if possible: 
Conversion Disorder is Curable!!!!!!!!!!
On  Dec. 23rd I went to the hospital for five days and encountered my neuro from five years ago. In his little man supercilious fustiness he pronounced me conversion disordered once again and boom, I am down the hope rabbit hole. At least for a few days. Sure, he was an ass. Sure, he refused to treat me with dignity, let alone medical care. There is no love lost between us. But the worst, was opening this pandora's box I had had hermetically sealed. Damn him.
So, I saw my good solid trustworthy MS doc this morning and laid my cards on the table. Bad news. No Coversion Disorder. With two spinal fluid exams 10years apart that were exceptionally high and my new larger lesion: MS all the way and not one of the better kinds. And, some of my inconsistent physical exams come from what he called the way other doctors have treated me over the years. And he put that in my medical record. Thank you! So yeah, happy me. 

Health Update: Home from the hospital last Thursday. Seeing continued improvement in right side, still struggling with spasticity and pain. Prayers are appreciated.


Jill said...

Love you!

Peace Be With You said...

So grateful that you emerged to let us know how you are doing.
Sorry things have been so challenging. I wish for you fortitude and resilience. And, of course, better health.

Anonymous said...

Any chance of suing the mother-flippant doctor now?

You, as usual, write your anger out, letting me feel your rage and sadness. There is so much that still works geniusly well, Janine. You are a phenomenal writer.



Kim @ Stuff could... said...

I am glad you are home and improving...MS is a monster but I hope you slay it! well, some

Bibliotekaren said...

"...while also shadowed by faceless bureaucrats who have the power to take away my income and insurance based on one doctor's note."

This is the black cloud of fear that hangs over my head more than the realities of the disease. I'm so sorry you've been dealing with this.


Have Myelin? said...

Yeah those faceless bureaucrats... they're like medical version of "Minority Report". LOL.