This is a somewhat unfinished thought process, but has anyone ever looked at your spine/vertebrae around where the root nerves for upper body exit the spinal column? I had severe lower leg pains/spasms growing up (thought to be "really bad growing pains" at the time) that have now been attributed to a congenital spine deformity that was squishing those particular nerve roots as my spine grew.
You're pretty much left with a central nervous system defect, whether it's brain or spinal cord. Yes, spinal cord is still possible, but it would suggest multiple sites of compression because you have spasm in both your arms and your legs. That essentially means it's more likely to be a problem located in the brain, as one lesion there could account for all the clinical signs. You also seem to suffer from the same issue with the muscles in your head, accounting for the strange headaches you've suffered all these years, which also suggests a problem originated in the brain.
Sorry, that's a very clinical explanation of something you probably don't want to hear, but I really do feel that this is a positive step because it will enable you to do something about the issues, even if they are not permanently fixable.
I accepted long ago that my brain is messed up in multiple ways. That I can deal with. But my spine? Heck no, that's not something I can work around. As B.O.B. pointed out, it turns out that a brain isn't actually necessary!
I didn't want to reply back in the e-mail. I've been paying attention since Sarah first brought it up. I was never aware that you were having problems all this time, some former roommate I am! Hopefully, you'll be able to find some answers now that you have some better leads on what is wrong. You're in my thoughts!
yeah, another former roommate said the same sort of "never noticed" thing. Yet many have noticed I do walk funny - and if I take off my shoes it looks even funnier ;) And if you see me sleep, you'll notice that I'll either push the bottoms of my feet against something or, if I can't, then I'll bend my legs. If I'm sleeping on my back, I bend my legs in a frog-like style, almost as though I'm laying in a yoga stance or something. Bending the knees relaxes the calves, which in turn relaxes the underneath of my feet, causing them to be less likely to twist up. What it also does is make gravity+blankets not pull my toes down - because even that sometimes, with my feet fully relaxed and not fighting it - can cause my feet to suddenly pass some sort of threshold where they curl up and twitch/cramp/etc. I can't sit in a chair - I have to sit on a leg, and I have to switch legs. Sometimes I sit cross-legged just to make it easier
( ... )
Oh... heh, I have noticed that you walk a bit different, I thought it was being from Texas. To me, it looks bow-legged, and not that you're up on your toes. And, I have seen the frog-stance sleep.
So, maybe I have noticed. I didn't realize it was causing you problems.
They never found what was wrong with me. It has advanced in several ways - now I get extreme bone pain (like my arm has broken) for no reason. It sucks. But nothing on x-ray, ekg, mri, anything. The point I'm making is that something is wrong. I know that. They know that. The "proof" isn't what is on the test, but what you feel. They might not be able to find it, but don't think that you are crazy. You aren't making this up.
Anyway, I'm THRILLED you don't have MS. That and lupus were the two things I was horrified of having. I'm sorry they still don't know what is wrong with you, but you've still got things to look at (brain MRIs are really neat to look at afterwards.) Just remember you aren't crazy. Negative tests mean nothing but the test was negative, not that you are makin shit up or all of this is in your head.
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You're pretty much left with a central nervous system defect, whether it's brain or spinal cord. Yes, spinal cord is still possible, but it would suggest multiple sites of compression because you have spasm in both your arms and your legs. That essentially means it's more likely to be a problem located in the brain, as one lesion there could account for all the clinical signs. You also seem to suffer from the same issue with the muscles in your head, accounting for the strange headaches you've suffered all these years, which also suggests a problem originated in the brain.
Sorry, that's a very clinical explanation of something you probably don't want to hear, but I really do feel that this is a positive step because it will enable you to do something about the issues, even if they are not permanently fixable.
<3
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So, maybe I have noticed. I didn't realize it was causing you problems.
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They never found what was wrong with me. It has advanced in several ways - now I get extreme bone pain (like my arm has broken) for no reason. It sucks. But nothing on x-ray, ekg, mri, anything. The point I'm making is that something is wrong. I know that. They know that. The "proof" isn't what is on the test, but what you feel. They might not be able to find it, but don't think that you are crazy. You aren't making this up.
Anyway, I'm THRILLED you don't have MS. That and lupus were the two things I was horrified of having. I'm sorry they still don't know what is wrong with you, but you've still got things to look at (brain MRIs are really neat to look at afterwards.) Just remember you aren't crazy. Negative tests mean nothing but the test was negative, not that you are makin shit up or all of this is in your head.
Love.
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