Today an appointment with my neurologist gave little more than the knowledge that I need more testing.
Here's what I learned today:
a) He doesn't think that the issues are a function of the "sub occipital stimulator" (everyone seems to call this something different...I still can't understand why.) He wants to hear it for sure from the neurosurgeon, but thinks it unlikely at best.
b) He's still suspicious of some other disease, something in addition to lupus, but that will require another spinal tap which he nor I really want at this point. He's going to start looking at some other rare connective tissue crap I've never really heard of before.
c) He's interested in the results of the neuropsychological exams to see if they can narrow down the specific areas of processing/comprehension/memory that he has effectively labeled and "diagnosed" as "cognitive deficits." So that's what I have right now. Cognitive deficits.
d) He's ordered another test. It's called a PET Scan. Mostly they do these on people with cancer to assess metabolic changes in the body. The one I'll have next week is going to be of my brain to do exactly that. Assess metabolic changes. The hope therein is to rule out CNS (Central Nervous System) involvement as a result of the recent lupus activity. If, for some reason that should get ruled in...that will not be a fun road. But I'm not going there yet.
e) He said if the PET Scan comes back inconclusive, he's going to want to do another spinal tap. The purpose would be to look for those other rare disorders mentioned above. I've recently been joking with my housemates that I should create a T-shirt to advertise how many LP's (lumbar puncture) I've had. Brooke thought Velcro numbers might work well and Lorne suggested simply a hole-punch system so that it can be adjusted. One hole punch for each tap, with the year next to it...in the shape of a spine, of course.
f) PET Scans are very expensive.
Back in college, in 2004 when blogging was hardly even a thing yet, I was here. Blogging before blogging meant anything to anyone. You can look in the archives for my past writings, but it was much more like a journal in the past. When we started fundraising, I messed around with the idea of launching something new for this new phase of our journey but actually hated that idea. I am a sum of all of my life and so much of it is here already. So I'm keeping it here. At least for now.
My main focus these days is blogging about our newest journey into the bizarre and wonderful world of gestational surrogacy. Posts dated 2013 and forward will trend heavily toward that journey. I don't promise everything I write will be about though. There might be other things that sneak in occasionally.
Please come along our journey with us. As the saying goes, "The more, the merrier!"
3 comments:
Praying.
Sounds like things have been pretty rough lately with not much brightness on the horizon. Stay strong and know that prayers are going with you on a rough road.
Thanks ladies :-D
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