A Month of Tests...and hopefully results

It's going to be a busy month of testing. We are praying every day that these tests will bring some answers. I checked in for my CT angiogram today and almost choked over the cost. I sat in the waiting room thinking of all the people have pitched in to make these tests possible right now. I couldn't feel more grateful. Thank you to everyone who has contributed, this means so much to us.

We've got a few tests down, and several to go.


Tests We've Done

MRI Brain - October
Muscle Biopsy - October
EMG Arms - December
EMG Legs - December
Athena Paraneoplastic Panel - December
 
CT Angiogram - Jan 5th (this scan is to look at the vessels in my brain, looking into the possibility of a vascular lesion)
MR Spectroscopy - Jan 7th (this scan measures the chemical signatures in my brain. We are hoping it will tell us something about that lesion and what it could be.)

Tests Upcoming  

MRI Brain - Jan 14th (we are looking for evidence of any other lesions. In the past I have had smaller lesions, in addition to the large lesion. If those lesions are still there, or if they are gone, it could be a clue to a diagnosis. They didn't show up in my most recent scans, so now we are going to search for them.)
MRI Cervical spine - Jan 14th (looking for any other lesions or clues)
MRI Thoracic spine - Jan 12th (looking for any other lesions or clues)
CT Chest - scheduling soon (checking to see if past spots in my lungs are completely resolved)
Neuromuscular Specialist - Jan 13th. (This isn't a test, but it's an important part of getting answers, so thought I would include it here. I am meeting with Dr. Sivakumar of the Neuromuscular Reasearch Center. Referred there by my current neurologist.)


Test Results So Far 

MRI Brain: Shows my brain lesion has grown since previous scans
Muscle Biopsy: Shows muscle denervation and several other non-specific abnormalities
EMG testing: Suggests muscle disease. Referral to neuromuscular specialist for a deeper look at this.

Paraneoplastic Panel: VGKC Antibodies turned up positive. These antibodies are present in a small handful of diseases, including certain peripheral autoimmune diseases. One example of that is called neuromyotonia. It actually fits some of my neurological symptoms, but it doesn't explain the EMG suggesting muscle disease, and definitely doesn't explain the brain lesion. So it might be a piece to the puzzle, but my neurologist says she wants to be very thorough before drawing conclusions from this test, since there is so much going on. VGKC Antibodies are also in a class of paraneoplastic antibodies. Meaning, sometimes they occur as a result of a tumor. Of all the paraneoplastic antibodies though, this one is less likely to be cancer related than others. So that's good. 

I will try to be good at posting results as I have them. It's going to be a busy month! Most of this testing should be done by the end of January. Really hoping we will have answers by then. Thanks everyone for praying for us, it helps so much!