Symptoms and Setbacks

Hello friends,

I'm sorry it's been almost two weeks again since I last blogged.  I always have bad news to share. lol ;)  The disease process (whether it's mito or something else) is progressing, and I'm dealing with way too many symptoms.  I look so normal, and yet I deal with all of this continually:

-Migraines
-Complex Regional Pain Syndrome
-Nystagmus
-Ptosis
-External Ophthalmoplegia
-Tinnitus
-Myoclonus
-Sleep-disordered breathing/sleep apnea
-Hypersomnia
-Muscle weakness/wasting
-Hypotonia
-Fatigue
-Premature Atrial Contractions
-Postural Orthostatic Tachycardia Syndrome
-Slight Tricuspid Valve Regurgitation
-G.I. dysmotility
-Dysphagia
-Hypermobility
-Cervical spine instability
-Mild scoliosis
-Dysautonomia
-Tremor
-Vertigo
-Muscle spasms/cramping in right hand

THIS is the nature of mitochondrial disease.

I mentioned in my last post that I've been having breathing problems at night, so my sleep dr. did increase the CPAP pressure this past week.  It's really strong, but it does help. :)

I've also been having some setbacks in physical therapy and occupational therapy.  My brain isn't recognizing where my left foot is, and I'm having sensory/proprioception problems.  The dizziness came back again, too.  But my physical therapist is awesome, and I know he'll do all that he can to try to help these issues.

My occupational hand therapist is wondering if the muscle spasms/cramping in my right hand is from dystonia, so he's having his colleague take a look.

In addition to all of this, I'm experiencing bad stomach pain after eating.  And it doesn't change with the type of food (gluten-free or not).  I really hope this isn't delayed gastric emptying..  Last year, I had that gastric emptying scan which came back normal, but I didn't have this symptom then..  If it's not better within the next week or so, I'll have to tell my GI specialist.

I'm just getting worse as each week passes, but the Lord has been so faithful.  I couldn't do this without Him.  I know I shared this before, but one of my favorite Scripture passages from the book of Isaiah says this, "Fear not, for I have redeemed you; I have called you by name, you are mine.  When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you" (Isaiah 43:1b-2).  That's what the Lord has been to me.  Always there. :)  And with His help, I know I can take on these challenges!

I will end with something that encouraged me!  Last week, a rep from Courtagen Life Sciences (where I got my DNA testing) emailed me and said he found my blog on the web! :)  He wanted to share it on Courtagen's facebook page which has over 26,000 followers!  I thought that was so cool and neat!  I took a screenshot of it. ;)

MRA results and more!

I'm sorry it's been a while since I last updated!  I just want to thank you all for your continual prayers!  It's been a tough couple of weeks.  At the end of February, I was dealing with blurred vision for several days, so my neuro-ophthalmologist squeezed me in for a follow-up.  She thinks I was experiencing an ocular migraine.  It's either that or mito-related.

Last Monday, I had an MRA done of my neck.  The test was pretty much finished, and one of the techs even took out my IV.  But one of the other techs came back and said they needed to do some brain sequences.  I was a little puzzled why (since I just had a brain MRI the beginning of February).  But I got that done and then went home.  When I woke up the next day, my mom said that the MRI place called again and they wanted me to come back that day for more brain images!

Well, I received the results on Friday, and they're somewhat abnormal:

This is me in vascular form. ;)  That blue arrow I drew is pointing to my left vertebral artery---see how it's kind of coiled and looped?  That's called tortuosity which is a new med term that I learned. ;)  People with tortuosity are prone to aneurysms/strokes, and my neurologist said it can be seen in patients with Ehlers-Danlos Syndrome.  My cervical spine instability is putting stress on my arteries....so my neurologist wasn't very surprised by this new finding.  She said it's just something to keep an eye on.

I've also been dealing with decreased appetite and weight loss again. :(  I've been doing all that my GI dr. told me to do, but it's not helping.  So he referred me to their clinic's nutrition therapist, and that appointment's next month.  We'll see if she has any other insight to offer..

After PT and OT today, my mom and I were able to ride the tram up to the OHSU hospital again because I had to drop off my CPAP sd card at the sleep clinic front desk (my sleep dr. wants to take a look at the data to see if he needs to increase the CPAP pressure because I've been experiencing breathing problems due to tired respiratory muscles).  OHSU gives free passes to patients! ;)  The ride was especially fun today because the weather was sunny and beautiful!

For those who don't live in Portland, this is what it looks like!  Took this while riding the tram. :)

That's about all for now!  Haven't heard more about the plan from the mito specialist in San Diego...the coordinator is waiting for tests like the muscle biopsy to get pre-authorized.  And you know how long insurance matters take.. :P