I know I kind of left you all hanging...sorry about that:) Things are moving and
shakin around here and I have been to a lot of Doc appointments. I thought I would start by showing you a few of the pictures. The kids wrote on the board in my room when they came to visit me at the hospital. I think it was the first time that I cried. I just didn't want them to be scared.
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This will be the one and only picture of me in a wheelchair because of MS. I don't plan on getting back on one of those.
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This is what everyone wants to see....my actual spinal fluid:) The fluid actually replenishes itself within an hour of taking out of the body. I didn't get any of the horrible side effects from the lumbar punch.
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Laid up after the lumbar punch:(
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This was the
EPT? test where they put an
eyepatch (see Casey, D, and Shannon...another reason for the patch:) on me and I had to watch this crazy screen to check the time lapse between what my eyes see and how long it takes my brain to respond. Kind of like an EEG.
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This first video was a funny one of Jake explaining to the kids about what I was diagnosed with. It was in the hospital. They came to visit me right after my spinal tap so I couldn't pick them up, and had to stay in bed:(
The other video is from toady! A nurse came out to the house to train Jake on giving my weekly shot. He totally
siked me out the first time...I was getting weak. The
meds are called
Avonex and it should help me slow down the MS and maintain it. I have gotten 2
nd and 3rd opinions and they all say the same thing. I have been through lots of tests lately.
So detail-wise where am I. I have an official diagnosis of MS. I have had DNA testing to rule out a disease called Von
Hippel-
Lidau that my Dad has. I will be getting results back from that in two weeks. I am seeing a
naturopath to check into diet options. I will be going up to
OHSU later in November to see a specialist for the remainder of my treatment. My numbness has diminished greatly in my hand and torso. But I have
L'hermitte's syndrome...which is like an electronic pulse going through my back, pelvis and legs. I just shock myself all throughout the day, kind of fun:) There are a lot more boring details...but I am still me, and we are all doing great and charging on. Ms.
Carlisle