*Good news/Bad news*

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!!! :D :D :D  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.

What happened last week

Last week was tough.  For once, it'd be nice to have no adventures. ;P

Wednesday afternoon, I started experiencing a bad headache, but I wasn't too concerned because I get migraines (they usually don't last more than a day).  So I just waited for the headache to pass.  It was still there the next day, though, and I started struggling because of the pain.  My left drooping eyelid got especially bad.  And none of my usual nerve pain meds or Ibuprofen and Aleve touched the pain.  As I mentioned in my previous post, my neurologist wondered if I had a TIA or small stroke..  And so I headed to the ER.  Because of the snow, I couldn't go to OHSU's ER, and I hated that I had to go to a different hospital.  Long story short, that was a terrible mistake because this particular ER didn't know "me" and my complicated medical history.  They didn't even do a full neurological exam.  All they did was give me one hydrocodone/acetaminophen tablet.  They sent me home.

The next day, the headache pain was so bad.  I couldn't eat much because of the nausea.  I started having balance issues and was also dealing with new right hand weakness.  So this time, my parents and sister drove me to OHSU's ER.  This hospital is so awesome (it's #1 in the state of Oregon ;).  They got me a room right away.  They did labwork and gave me lots of IV pain and nausea meds.  People with EDS are prone to aneurysms and strokes, so the doctors were concerned that maybe I did have something like that.  They ordered two emergency MRIs which I had done there in the ER.  Thankfully, the scans were clean!  The doctors told us I was probably dealing with a "complicated migraine" which is not just a simple migraine.  They're complex and can cause weakness/neurological issues.  They gave me IV toradol for pain, but that unfortunately didn't help.  So they put together a "migraine cocktail" you could say. ;)  An IV magnesium drip, Reglan for nausea, and IV benadryl which has been shown to reduce pain.  My pain went down from a 9 to a 5, and my drooping eyelid improved.  We were in the ER for 8 hours.  But we arrived home at 2:45 AM, and I slept till 4 PM the next day!

The adventure wasn't finished. ;P  I woke up because my blood sugar dropped very low (a bad issue associated with mitochondrial disease).  My heart was pounding, I was shaking, sweating, and extremely weak.  I laid on top of our stairs, unable to move.  My mom had to quickly spoon feed me grape juice to get my blood sugar back up.  It was hard for me to even suck from a straw because I was so weak.  I had to sleep a lot after that, and it was too exhausting to even watch a movie.

That episode on top of two ER visits did me in, and I'm still trying to get better from this weakness.

So that's what happened last week.  How was your weekend? ;)

One step forward, two steps back (again)

Hey, friends,

Just a quick update!  Thank you so much for all your steadfast prayers and support as I continue this incredibly long journey..  All of you so encourage me. <3

My big neurology appointment was originally scheduled for next Tuesday, but it got moved up to this morning!  That and having a sleep medicine follow-up as well this afternoon made for a busy day.

Based on my latest clinical symptoms (mainly, new right arm weakness and cognitive issues), my neurologist is wondering if I had a TIA (mini stroke)..  Definitely wasn't expecting this. :(  She already put in an order for a brain MRI and cervical spine MRI which will be my 10th and 11th MRIs....too many!  Again, she's not positive I had a TIA (but there are some things that point to it), so she wants to be safe rather than sorry.  I'm so thankful that the Lord is in control no matter what!  I couldn't do any of this without Him!

Dr. G also put in an order for me to have somatosensory evoked potentials done again.  I had this long test done back in January of 2013, but she wants to repeat it to re-evaluate my spinal cord because I have very hyper reflexes which isn't normal.

My sleep medicine appt. went great!  Dr. H is so sweet and one of the most personable doctors ever. :)  He's also the youngest out of all my doctors---only 18 years older than me! ;)

I just want to close with a quote that one of my friends shared with me last week.  I hope it refreshes you!

"Trained faith is a triumphant gladness in having nothing but God--no rest, no foothold, nothing but Himself--a triumphant gladness, rejoicing in a very fresh emergency that is going to prove Him true.  The Lord Alone--that is trained faith." ~~ Lilias Trotter