Monday, August 25, 2014

Next Trial Up....

I was supposed to get the results of my MRI/MRA on Friday - then both of my doctors were out that day.  I asked if someone else could give them to me and was told they didn't have them yet.  In my gut, I had a feeling it meant there was something my dr was going to need to explain, but had hoped that maybe they just really didn't have them yet.  Well, it looks like it had to do with results....

The good news is I don't have MS, which is what I was thinking I had.

Bad news is I do have a brain aneurysm - he also mentioned a small lesion on my brain and I'm not totally sure what that all means....

They also found a Syrinx (fluid filled cavity) in my Spinal Cord.  The Syrinx explains the numbness in my back and pain in my stomach - they will only operate if I get to the point where I cannot handle the pain since it would be surgery on my spinal cord.  The Neurologist seems to think there could be a connection between that and my MTHFR mutation and this. But no solid evidence on that at this point, just something he came across in research.

He has ordered a CTA to look again at the aneurysm, waiting on a date for that.  He also ordered an EMG nerve conduction study which is scheduled on Sept 23.  Hoping they will move that up.

They will monitor my aneurysm and if it gets bigger, then I guess we'll talk brain surgery too.  I'm obviously not happy with this news. The aneurysm was not on my radar at all, with the exception of I have been saying for years that I felt like Matt was going to have one and leave me here with the kids alone.  Now I'm wondering if I was worrying about the wrong person. :\ Going into my MRI/MRA last week, it wasn't the test that had me worried, but the possible results...  I just knew I was going to be confronted with something I wasn't expecting.... and here I am.... sigh.

I trust God and am thankful that we found this now.  I almost canceled my apt when my headaches went away, so I know He is providing.  I'm glad to have an answer for the stomach cramp and back numbness and feel pretty confident that this Neurologist will, as he told me "get to the bottom of this" and help me find an answer to what the rest of my still unexplained symptoms are.

He is leaning towards them being Neuropathy as a result of my Ankylosing Spondylitis and Psoriatic Arthritis -  and most likely not a lot I can do about them.

I'm really discouraged with my physical health.

Please, I do not want any advice AT ALL, and I mean none. at. all.  I don't want to know what you did or didn't do.  I don't want to know about your friends success or worse, death.  I am going right back to when I got Rachel's diagnosis and I am respectfully asking that you keep your knowledge to yourself and let me lean on God.  It's better for both of us that way, I promise.  (*this rule does not apply to my mom who has a right, as the one who put up with me all my life, to say whatever she wants at whatever time she feels necessary) :)

Just please pray for me.  This is the ONLY reason I am sharing this, because I NEED prayer. God is the only One who can handle this in me physically and especially in me mentally and emotionally.  So please just bring this before His throne on my behalf as often as you think of me.  Pray for complete healing as well as the grace for me to be able to take my thoughts captive so that every twinge doesn't have me worried.

And not to sound dramatic, but I need extra prayer that if this is going to be something that leads me home to Jesus that I will be able to seize the moments with my family between now and then and show them who Jesus is the best I can while I'm here.  It won't happen if I'm consumed with fear and worry.... so please pray specifically for that. (actually I can use that prayer even without all of these new things!) Pray also especially for God's peace in this midst of this uncertainty.

To end on a funny note... I seriously just asked the Neurologist if the fluid in my spinal cord could be from taking entirely way too much LSD in my youth.  I had always heard that acid stayed in your spine forever and I did a LOT of it.... he laughed a little and assured me that isn't the case.... so that's good, it's not my fault.  Ha!

And another trial begins....continues, really....  I can't wait for heaven.....

5 comments:

  1. Praying an extra prayer for healing and peace for you! xoxo

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  2. I know - "heaven is a wonderful place" as the song goes... Come now, Lord Jesus.

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  3. I am so sorry to hear this Stacy. Thinking of you and your family!

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  4. Never give up! The last key on the ring may be the one that opens the door.♥

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  5. Oh no! I'm praying praying praying for you and your loved ones!
    Hugs, anja

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