THIS IS MY STORY . . .

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Feb 26, 2014

I have good news and bad news….what would you like to hear first? 😉  Let’s start with the bad:

I got my MRI results, and the report says I have levocurvature of my cervical spine which wasn’t there before.  I also have wasting of several vertebrae, and my C5-6 disc narrows the ventral CSF space of my spinal canal.

When I got those recent MRIs, the doctors forgot to order an MRA (magnetic resonance angiography) of my neck which my neurologist requested.  Sooo….guess what.  I have to get yet another MRI which will be my 12th one so far. x[

For the past few weeks now, I’ve also been dealing with daily cramping/stiffness in my right hand which makes it difficult to write, text, hold a fork, crochet, play piano, etc. 🙁  And this was my good hand!  My physical medicine dr. referred me to occupational hand therapy again, and he also wants to do a bilateral EMG/nerve conduction study which will be my 6th EMG.  That’s scheduled for March 11th.

I also started experiencing dizziness/blurred vision this past week, and it’s been horrible….my neurologist still suspects possible TIAs.  Thankfully, my MRI is scheduled for this coming Monday.  The fatigue has been really bad, too, and I had to sleep 16 hours yesterday. :[

I know I’m getting worse, and I hate that my body’s not functioning well….but are you ready for the good news? 🙂

I have a tentative appointment with a mitochondrial disease specialist in San Diego on June 17th!!! 😀 😀 😀  So very thankful!  The Lord answered my prayers!  I got referred to this dr. last July, and we were all beginning to wonder if this would ever happen!  This specialist has been working with mito patients for over 40 years!  He’s also on the scientific and medical advisory board for the United Mitochondrial Disease Foundation.

I should be hearing more about the plan soon. :]

P. S. This is my “loaner” gait trainer until I get my own.  Like it? 🙂  I am determined to learn how to walk normally on my own, even if it’s just for short distances!

P. P. S.  Please pray for 15 year old Justina Pelletier and her family.  What happened is terribly sad, unreal, and tragic.  If you haven’t heard, her story has made national news.  Google her.  This hits home because she has mitochondrial disease. 🙁  Her parents lost custody of her, and her health has dramatically declined.
Here are a couple of good articles:
http://abcnews.go.com/Health/advocates-fight-teen-justin-pelletier-held-state-pysch/story?id=22312907  In this article, Dr. Richard Boles of Courtagen (where I got my DNA testing) spoke.
http://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html  This article was written by Cristy Balcells, executive director of MitoAction.
Post written byKerissa

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