Re: Please help! im horrified:/
great advice, but honestly? just given the wide array of symptoms that all appear to have a neurological 'base" of some kind here, i would see about getting an MRI done literally from the brain to end of the spinal(this would merely include what IS your entire 'central nervous system"), just to rule out ANY possible congenital(being born with) types of very possible vascular or spinal malformations that you can just be born with inside of the brain and or the spinal cord too, among other real possibles? i was born with a glob of blood vessels right INSIDE of my own spinal cord that was generating ALOT of strange and almost always really 'unexplainable" symptoms for me over the many years i had it but just did NOT have a freaking clue it was even there since i had never ever before in my life actually had to have an MRI done on that c spine area or any other ever MRI done either?
we simply do NOT actually even know just what can be inside of our own bodies til it either starts to 'present itself' with specific symptoms(your "situation/generators" have been presenting symptoms practically your whole life here), or it turns up 'incidentally' upon any given scan while looking for something totally different? that was exactly 'how' my lil glob of vessels actually was found, when checking out what disc i had herniated in my neck/c spine area? it just 'showed up" on the films too, and right smack inside almost the whole L side of my cord area. had NO clue it was there til THAT one scan was done that found it. it DID explain a TON of strange things that happened like my whole life having to do with my body parts with no real explanation?
but DO seriously get in to see your doc here for that one referral for a full CNS and contrasted(this is dye they use that really helps to ID certain things esp within the brain or vessels)MRI to finally just be done. i cannot believe this has gone on for THIS long and no one has ever actually done an MRI(from what it sounds like here anyway?) on the brain and/or that spinal cord. it just IS between the brain and the spinal areas(which ARE totally interconnected in MANY different ways), the very 'base of operations' where everything simply gets fired/generated by signals to and from the brain and to the outter(peripheral) areas and back again, which all tell our bodies what to do, or how to simply even move a flippin toe? anything that just has the potential for blocking or "messing with" certain brain or spinal signals(the signals connect from within the spinal 'tracts" in the cord on up TO a very specific area within our brains, directly) can TOTALLY generate some really insane types of symptoms that you have also actually described, even your breathing, depending upon just "what IS being impacted" in one or both of the 'bases' i mentioned?
i now live with some very significant spinal cord injuries from having my glob removed, and trust me here when i say, anything just IS possible to 'do' really insane things to body areas or 'parts"(the "perceptions' were actively going on way before this glob was even removed). you can also 'percieve' certain things like they are actually occuring within or 'to" your own body but nothing IS in reality actually 'doing' anything, or moving? its just something you can 'think or perceive' as happening that is sooo flippin 'real'. thats a very strange one to even begin to get used to.
i just think, as well as the above poster, that its high time to finally get some very in depth 'looks' deeper within the very bases of what would easily generate the types of neurological and possibly other symptoms that you have had for wayy too long now with NO actual explanation. you just deserve a much better life than this nightmare you have BEEN living in to this point. just see about getting that contrasted full CNS(would include brain and spinal all the way down to sacrum, or at least to the end of that lumbar) MRI scan done. i would think just considering how long and the insane nature of your ongoing symptoms you have been suffering with, that 'something' would almost "have to" show itself upon at least the contrasted form of MRI in either the brain, spinal or possibly both, considering.
just DO try and make getting this one FULL/contrasted MRI your very main priority right now. and if you actually have to push your doc to do this, tho i cannot even imagine why he would refuse, since it realistically should have been done long ago, keep pushing and bugging the living heck out of him til he finally gets this done FOR you. which is his job to simply 'do' the most "appropriate' indicated testing when needed for his patients. and trust me, this one just IS wayy overdo for alot of real solid reasons and possibilities. i DO hope this can get done very very soon hon. you just deserve answers, and some real solid 'peace" in your life as well. good luck with this and please DO keep us posted hon. **
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.