So, I was thinking last night and this morning. Seeing as how my doctor has now gone through every testable thing that even somewhat describes my symptoms, I was feeling at a loss, and not knowing where we would go next. It will be weeks before I can see my doctor again and ask him what comes next. I was wondering, what if he has no ideas? Should I get ideas for him?
Then I remembered that many months ago my doctor and I talked about how it could be Hereditary Spastic Paraplegia. This is a disease that you can't test for, you merely eliminate everything else. So, we just had to wait and run the tests. I had forgotten about it. However, now that we've eliminated everything else? hmmm. :-)
I looked up the condition again today, to remind myself about it, and was shocked at how exact the symptoms are to mine! Of all of these autoimmune and spinal cord diseases we've been testing for, none of them described me exactly, and most didn't even describe me much at all. It was quite a relief to read something again that really did describe me.
So, I called up my doctor's nurse, in attempt to get a message through to my doctor. I asked her to please remind him that we once talked about HSP, and to ask him to see if he thinks it describes me now that we've run all these tests.
Who knows if the message will actually get through, or what my real diagnosis really is. Time for more waiting. Someday, I'll get another appointment, and then I'll get to see what he thinks of all of this. :-)
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Thanks to all of my great friends and family for hanging in there with me through all of this! I couldn't do it without you and your support and your prayers!! Thank you so much. Lots of love back at ya!! :-)
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Oh --- and bonus points to anyone who knows where this picture (above) was taken! :-) I didn't take it, I found it on the internet.
6 comments:
I got sucked through some worm hole and was thrown back into High School! The science building in on the right. English and Math on the left. Straight down at the bottom is where the lunch area was. Trippy. I am headed down there tomorrow. Good luck with any diagnosis you get...did that even make sense?
Yay, Jana won the bonus points today!! :-) Thanks! :-)
Yeah jana totally won, I was going to say mvhs breezeway, definitely don't remember the specifics, although i think i had a locker on the busy hallway on the left and i think i jumped out of a window on the right when they had a guy bring a gun to pretend he was going to kill us 'as a drill', yeah that was fun, NOT! or maybe i'm flipflopped. anyways, going to read the medical info again and then comment again, luv u sis!
oh yeah i see it now, science with cote on the right, english with schwab on the left
researching Hereditary Spastic Paraplegia now...makes sense to rule everything out and see what you are left with. is that the zebra analogy in play? i will research more, thanks for keeping us posted, and good luck! ps, hoping the message gets thru to the doctor!
Kim, yes, you're totally right, Science is on the right and english is on the left. Good job!
Yes, HSP would reflect exactly what the Zebra analogy means. So, this might all make sense, really. :-) Thanks for following along, I am really glad. :-)
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