Hereditary Spastic Paraplegia

Done at last! Done at last! Thank God Almighty! It is done at last!!!
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Looks like my post below, from this morning, worked like washing your car before it rains! I posted that he'll never call with the test results, and he calls! Yay!
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The blood tests for the last two things he was checking for did, in fact, come back negative today. That was the last of the tests. My doctor told me just now that I am now diagnosed with Hereditary Spastic Paraplegia (HSP).
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I know it's odd to be celebrating receiving a diagnosis of a degenerative uncurable cripping disease, but I've already had really serious symptoms of the degenerative uncurable cripping disease for a year and a half. I've already adapted to the knowledge that I have such a disease, so it's a celebratory thing now to actually have a name for it! Yay!
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I'd like to thank the Academy, I'd like to thank God, and I'd like to thank my friends and family all over the country and world who have been there for me, and have prayed that I would someday get diagnosed. Thank you!!
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It's so nice to know what I have. I was pretty darn sure that these last blood tests would be negative, so I joined some national HSP clubs and email lists like a month ago, and have met lots of other people online who have this disease too. It's nice to have a disease with a home. I just can't go on anymore telling people that I don't know why I can't walk. It's a pretty big thing, and to not know why, was also pretty big. I thank God that that part of my life is over. :-)
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Hereditary Spastic Paraplegia isn't really one disease, it's a category of similar diseases. We'll never know which version I have. There are many, and there’s no way to test for them all with current medical technology. So, one person with HSP can have symptoms a little different from another, because of the variety of the types of HSP.
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The condition is genetic, which means it’s simply in my DNA. There was nothing anyone did that could have or did cause it. I was just born to be a paraplegic. Isn’t that a weird thing? I never used to know that could happen to a person.
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If you want to research it more, this is a good page of information:http://www.sp-foundation.org/hsp.htm.

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There is also a brief description here: http://www.ninds.nih.gov/disorders/hereditary_spastic_paraplegia/hereditary_spastic_paraplegia.htm

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The thing that is going wrong, in technical terms, is: "axonal degeneration in the corticospinal tract". This is permanent nerve breakdown in the portion of the brain and brainstem (and spine in some people) that control voluntary movement. Everyone has genes which make the proteins needed to keep nerves and axons between the nerves functioning. My genes were programmed to stop providing some of those proteins as I age. Therefore, some of the nerve signals to move can’t get through.
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There is no treatment or cure for HSP. All I can do is take anti-spasm medication, which I'm already on, and get mobility equipment, which I took care of a long time ago. That's it. Just get used to it and get on with life.
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I got worse three times last year, which was fast. That’s why I went from walking to wheeling in less than six months. Then it was stable for a long time. Over the month of July just now, I've gotten worse again. This will keep happening the rest of my life, though it used to happen more slowly (less often) when I was younger, and will probably slow down again in the future. Apparently it’s normal for the disease to really manifest itself when people are in their 20’s, 30’s, or 40’s. I’m 35, now, and it’s been really affecting my life for about 7 years now, so I’d say that’s right on.
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Now, my torso is as effected as my legs are. I can't sit up without support for more than a few seconds anymore. I used to be equivalent to like a T10 paraplegic, but now I’m like a T1 paraplegic. Incomplete, of course. I can still feel everything, and there’s plenty of moving I can still do. I even take a few steps every morning. I've ordered some taller back posts for my chair, and we've adjusted how my wheelchair gets into my car, and I use my scooter more around the house now. Basically, I've adapted again. :-)
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