Monday I had a follow up neuro appointment that I had been waiting for what seemed like an eternity.
He went through and did all the normal checks he would do.
He said my strength was really good and a few of the things I did better on.
I now had a bit of a reflex in my right elbow. He said that is the shortest nerve.
The nerve that runs to the wrist second longest and then the leg even longer.
I'm not sure but I think he was implying the other nerves are longer so may take a bit longer to regain the reflexes in those areas.
We then discussed my EMG results.
He said that none of my emgs showed any demylienation so he's not sure why they would have diagnosed me with a demylienating disease with no evidence of it on any of the test.
The increased protein levels point to auto immune not specially cidp.
He then said he wanted to run some more tests because he thinks it's something called Sjögren's syndrome.
I will be going in did a gallium scan.
They will inject me with some radio active dye, when I will return the next day for a scan and the following day as well.
The scan should show him if there is inflammation in my mouth or eyes because that's a big factor in this disease once he has that answer they will then do a biopsy of either my lip or my eyelid .
Neither sounds thrilling but I think I would choose the lip if given the chance to pick.
He said regardless all my blood work came back Negative for lupus, Cancer and something else that I'm forgetting. They actually sent my blood to the mayo clinic which I thought was pretty cool since they are supposedly the best of the best.
Other than that he said everything looked good. Just waiting on a call now to schedule the scan. They also took another obscene amount of blood for more tests. Sometimes I feel like a lab rat.
I kinda had a mini melt down on Tuesday and was generally in a funk.
It's just frustrating to think you finally know what is going on with your body and then their like "just kidding! You were lied to". I have to say I am so glad we didn't go through with the chemo first thing or I would be real upset right now.
Today I woke up feeling quite better and relaxed most of the day because I knew I was going out tonight. My friend Ang put on a very fun pottery night.
It was a bit of a challenge since there was stairs all around but with the help of my friends we made it work!
The clay was great OT for my hands and while my pumpkin and bat are not the most amazing it was seriously a lot of fun with a nice group of ladies.
Also was explained more of where the term spoonie kinda came from and man does it make sense. I totally used all my spoons up today that's for sure!
I'm getting very excited for my road trip with Leah as it's the first one I've taken since all of this happened. I've been a bit in an emotional funk and im hoping this is going to bring me out of it.
Nothing quite like a weekend with your best friend! Laughter is good for the soul.
I hope to start updating this more, but I will admit I am starting to feel like my posts are boring.
So thanks to everyone who reads this thing :)
Cheers
Xo
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