Sorry for the slow updates, we have been moving and its been a huge overwhelming project. We still have boxes everywhere, but at least everything is here and we are making some progress with the unpacking. I have had a couple really amazing weeks, health wise, and I am soo grateful for that! I've had more energy, stronger muscles, less pain, fewer sick days, it's been amazing!! Some days I am standing in my kitchen doing dishes, and it feels sooo good to be there! Who knew it was possible to feel grateful to be doing dishes?? It's pretty great. I am feeling very blessed, because we definitely need this extra energy right now. We haven't been doing any treatments or anything, I am just spontaneously having good weeks, after FOUR months of being down and barely able to do anything at all. We are guessing this is a relapsing-remitting condition, because there isn't any logical reason I should be improving right now. My stress levels and exhaustion levels should be worse than ever with this move, but instead, I feel pretty great. I'm a blessed girl. Thanks everyone who has been praying for miracles like this :)
Things are still moving forward with the search for a diagnosis. I think we may have found something! (suspense...) For right now though, I just wanted to post the list of results. I will come back soon with an explanation of what it all means and what my docs are thinking about my diagnosis.
Things are still moving forward with the search for a diagnosis. I think we may have found something! (suspense...) For right now though, I just wanted to post the list of results. I will come back soon with an explanation of what it all means and what my docs are thinking about my diagnosis.
Test Results
CT Angiogram (Jan): suggested either a brain tumor or a vascular lesion. Inconclusive.
MR Spectroscopy (Jan): suggested either a brain tumor or an inflammatory lesion. Inconclusive.
T3 MRI Brain (Jan): High resolution MRI shows I have 3 brain lesions. The one large lesion and two smaller lesions.
Spinal Tap (Jan): We are still waiting on the spinal tap results from Mayo clinic (its been a month!) We have one panel back, but we are waiting on two more. The panel we have shows oligoclonal bands (5+) which suggests an autoimmune or inflammatory process.
Angiogram (Jan): The most surprising result yet, the angiogram ruled out a vascular lesion. Docs said the vessels in my brain are perfect, flawless.
Mayo Clinic Labs (Feb): This test confirmed the presence of the VGKC antibodies.
Leg MRI (Feb): shows structural issues with my hip, bursitis, and tendonitis, possibly contributing to some of my right leg issues. No evidence of primary muscle disease.
Spinal MRI x2 (Feb): clear, no lesions or malformations.
MRI Brain (Oct): Shows my brain lesion has grown since prior scans.
Muscle Biopsy (Oct): Shows muscle denervation and several other non-specific abnormalities
EMG testing (Dec): Suggested muscle disease. Non specific abnormality.
Muscle Biopsy (Oct): Shows muscle denervation and several other non-specific abnormalities
EMG testing (Dec): Suggested muscle disease. Non specific abnormality.
Athena Diagnostics Labs (Dec): VGKC Antibodies turned up positive.
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