StrictNon-Conformist
01-21-2008, 05:25 PM
Ok, so the topic is a bad pun, and I'm not an open source bit of DNA :)
I'm here to get a further understanding of the sort of issues I may sooner or later have more experience with: I was informed 5 years ago by my urologist at the time, "If you have such-and-such symptoms happen, that's because your lowest 3 vertebrae aren't fully formed." as though he thought I knew that minor little detail about myself at that time. Ah, having repeated bouts of kidney stones has helped me understand my reality in unexpected ways :D
One of the weird things is that even though I was diagnosed as having hydrocephalus as a kid (though no shunt was considered necessary, apparently) and I went into febrile seizures from catching strep throat from my oldest brother when I was 2.5 years old and then put on phenobarbital for a few years (until my parents weaned me off it: they didn't like seeing what it did to me, and I didn't care for it, either) and for all I know, I had a bunch of absence seizures, partially inferred from memories of elementary, it's odd that it doesn't appear to be visible on an MRI as an adult.
But, the spinal deformity most certainly does visibly show on x-ray, even to the untrained eye, and I've had evidence that things aren't 100% functional all the time, but I'd prefer to maintain maximal functionality, and my observation with other things I have to deal with is that going to doctors-only sites gives useless practical information.
Let's see if I can summarize the list of puzzle pieces that define my physiological/neurological existence without leaving stuff out:
1. Born 6 weeks premature as the male half of a set of twins (no, we aren't identical, and yes, people DO ask that!) to a rather unhealthy mother (she had polio when she was 6)
2. Diagnosed with hydrocephalus as a baby or at least very young (for some reason, I don't remember :D ) and had a very large head as a baby, and it hasn't exactly shrunk... Nothing was stated about the spine, perhaps because they didn't see anything immediately obvious on the skin, so didn't think to check. I guess I never really noticed, either, partially since I can't really look there...
3. I clearly have connective tissue and skeletal incomplete formation issues, and at the age of 24 when I had jaw surgery to correct a major overbite, the orthodontist listed in the treatment plan that I had Crouzon's disease (I wonder if that's related at all)
4. Due to poor fine and gross motor skills, along with other things such as a bit of dyslexia, I spent at least part-time in the special education department all throughout 1st-12th grades: part of what was going on wasn't understood at that time.
5. Asthma/allergies that developed as I became an adult
6. No useful sense of smell (still wondering about that, may be related to #3, or may be something else related to being born premature and half-baked, which my research indicates may have other major implications)
7. In October of 2002 while in the midst of dealing with a storm of kidney stones, I was diagnosed (after much testing) with an atypical case of Meniere's disease, and as of that time, I had lost 1/3 of my vestibular function in one ear, and it likely has progressed.
8. Friday, December 13th, 2002 I was unexpectedly diagnosed with Asperger's Syndrome (while talking to the counselor describing how I had recognized a pattern of how I functioned over my life, which I described as inertia, all while not looking at him directly, stimming, speaking in a monotone, and expressing how illogical it was that he asked me if I felt a sense of loss for something I never had! I had been unemployed for a lengthy time after being laid off, couldn't find work locally in my field (probably not much of anywhere, actually) with my skillset, and dealing with chronic/acute medical problems that made it impossible to predict anything and were getting quite expensive)
9. A 6 month checkup for kidney stones on January 9th (or 6th: darn similar-looking numbers) and the urologists springs this one on me :P
10. IBS diagnosed many years before...
11. High blood pressure reared its head about 18 months ago, also with a heart rhythm abnormality that they had to verify that my heart was actually getting enough oxygen through all of it, brought on largely by the few months of high blood pressure before it was caught (if you have abnormal pressure and you know it, GET IT CHECKED OUT!)
In early 2002, I had started running for a few reasons, partially to help deal with sensory overload and dissipating it (messed up inner ear along with infections/pain from kidney stones and other sensory issues I've always had) as well as strongly encourage kidney stones to evacuate ASAP (they're hard to keep around when you're moving that much) as well as adapt to my changing inner functionality as it happens. I ran my first 5K race while in the process of having a kidney stone going through my system and figured out later I was bleeding internally, and in the fall before the revelation of the spinal issues, I had completed a half-marathon, though I had already learned that correct form/posture was vital, in that if I went even 1/2 hour with any slouch, I'd loose the ability to properly control or feel below the waist, along with pain. I've run many other shorter races since then, done marathon training (before something else happened) and completed half a dozen other half-marathons, and intend on continuing my insane plan. Last year I started employing personal trainers to get myself in much better condition strength/flexibility-wise to maximize chances I won't fall to pieces, carefully making sure not to overexert beyond my capacity, safely. I decided to get online here as a result of wanting to research from real people what to watch out for in non-clinical terms, so as to maximize capacity of what I can do as long as possible.
Ok, so this is long-winded, but... that's my nature!
I'm here to get a further understanding of the sort of issues I may sooner or later have more experience with: I was informed 5 years ago by my urologist at the time, "If you have such-and-such symptoms happen, that's because your lowest 3 vertebrae aren't fully formed." as though he thought I knew that minor little detail about myself at that time. Ah, having repeated bouts of kidney stones has helped me understand my reality in unexpected ways :D
One of the weird things is that even though I was diagnosed as having hydrocephalus as a kid (though no shunt was considered necessary, apparently) and I went into febrile seizures from catching strep throat from my oldest brother when I was 2.5 years old and then put on phenobarbital for a few years (until my parents weaned me off it: they didn't like seeing what it did to me, and I didn't care for it, either) and for all I know, I had a bunch of absence seizures, partially inferred from memories of elementary, it's odd that it doesn't appear to be visible on an MRI as an adult.
But, the spinal deformity most certainly does visibly show on x-ray, even to the untrained eye, and I've had evidence that things aren't 100% functional all the time, but I'd prefer to maintain maximal functionality, and my observation with other things I have to deal with is that going to doctors-only sites gives useless practical information.
Let's see if I can summarize the list of puzzle pieces that define my physiological/neurological existence without leaving stuff out:
1. Born 6 weeks premature as the male half of a set of twins (no, we aren't identical, and yes, people DO ask that!) to a rather unhealthy mother (she had polio when she was 6)
2. Diagnosed with hydrocephalus as a baby or at least very young (for some reason, I don't remember :D ) and had a very large head as a baby, and it hasn't exactly shrunk... Nothing was stated about the spine, perhaps because they didn't see anything immediately obvious on the skin, so didn't think to check. I guess I never really noticed, either, partially since I can't really look there...
3. I clearly have connective tissue and skeletal incomplete formation issues, and at the age of 24 when I had jaw surgery to correct a major overbite, the orthodontist listed in the treatment plan that I had Crouzon's disease (I wonder if that's related at all)
4. Due to poor fine and gross motor skills, along with other things such as a bit of dyslexia, I spent at least part-time in the special education department all throughout 1st-12th grades: part of what was going on wasn't understood at that time.
5. Asthma/allergies that developed as I became an adult
6. No useful sense of smell (still wondering about that, may be related to #3, or may be something else related to being born premature and half-baked, which my research indicates may have other major implications)
7. In October of 2002 while in the midst of dealing with a storm of kidney stones, I was diagnosed (after much testing) with an atypical case of Meniere's disease, and as of that time, I had lost 1/3 of my vestibular function in one ear, and it likely has progressed.
8. Friday, December 13th, 2002 I was unexpectedly diagnosed with Asperger's Syndrome (while talking to the counselor describing how I had recognized a pattern of how I functioned over my life, which I described as inertia, all while not looking at him directly, stimming, speaking in a monotone, and expressing how illogical it was that he asked me if I felt a sense of loss for something I never had! I had been unemployed for a lengthy time after being laid off, couldn't find work locally in my field (probably not much of anywhere, actually) with my skillset, and dealing with chronic/acute medical problems that made it impossible to predict anything and were getting quite expensive)
9. A 6 month checkup for kidney stones on January 9th (or 6th: darn similar-looking numbers) and the urologists springs this one on me :P
10. IBS diagnosed many years before...
11. High blood pressure reared its head about 18 months ago, also with a heart rhythm abnormality that they had to verify that my heart was actually getting enough oxygen through all of it, brought on largely by the few months of high blood pressure before it was caught (if you have abnormal pressure and you know it, GET IT CHECKED OUT!)
In early 2002, I had started running for a few reasons, partially to help deal with sensory overload and dissipating it (messed up inner ear along with infections/pain from kidney stones and other sensory issues I've always had) as well as strongly encourage kidney stones to evacuate ASAP (they're hard to keep around when you're moving that much) as well as adapt to my changing inner functionality as it happens. I ran my first 5K race while in the process of having a kidney stone going through my system and figured out later I was bleeding internally, and in the fall before the revelation of the spinal issues, I had completed a half-marathon, though I had already learned that correct form/posture was vital, in that if I went even 1/2 hour with any slouch, I'd loose the ability to properly control or feel below the waist, along with pain. I've run many other shorter races since then, done marathon training (before something else happened) and completed half a dozen other half-marathons, and intend on continuing my insane plan. Last year I started employing personal trainers to get myself in much better condition strength/flexibility-wise to maximize chances I won't fall to pieces, carefully making sure not to overexert beyond my capacity, safely. I decided to get online here as a result of wanting to research from real people what to watch out for in non-clinical terms, so as to maximize capacity of what I can do as long as possible.
Ok, so this is long-winded, but... that's my nature!