sorry you are going thru all this at all alex. i am wondering if you have been to ANY possibley local or even a bit further away type of actual university teaching type of hospital yet? both myself and first my son both had very strange and very rare conditions that docs did not know much about. even the best neurosurgeons could not give me any real answers as to what my glob inside my spinal cord was all about or what it was going to actually do TO me? until i finally got referred by my wonderful primary to the U of MN here in MN, which luckily for us is not too far away, THAT was where i found the one and only NS who actually had had alot of experience over his 37 years just working at the place where more people do tend to actually go to when they cannot GET info or any real answers or Dx of their more obscure types of conditions just GO to for help. it takes ANY doc or any specialist who has actually seen what YOUR condition actually is or has the most overall lilkleyhood of finding out based upon seeing other patients who have the same thing or variances of a specific type of condition to just help identify what it actually is and the best possible ways to try and treat it. another thing that the teaching hosps also have availiable to them is a big interconnected type of network with other teaching hosps too that if anyone else has ever presented with anything like your condition they would more than likely be able to simply access that info like other places can't? if you have not yet gone to one of these types of hosps yet, this would be where i would try and get to for the best possible chance at truely getting yourself Dxed properly.
the one thing you also need to keep in mind is the possibility that whatever your condition actually is, it can also mutate at times into something a bit off from the normal presentation too? this was my sons rare condition and we did end up at that very same hosp, the U of MN again for his liver nightmare. anytime a 'normal' and espescially more rare disease process or condition presentation comes from mutation, it will not always show itself in any real 'normal' way since it now has newer components kind of attached to it in a way? you know what i mean? this just could be what is going on with you and what you actually have. but i would try and see someone at any local type of university hosp for something like this. if you have tried this already, see if there is any other university that you can possibly get to. i just think this seriously would be your very best bet with the more rare type of condition you may have. and there is also the possibility that you could actually have more than one real condition going on all at the very same time too which would change presentation as well? alot of things can change one condition into something very different at times.
it all comes down to just what are YOUR symptoms and what IS being affected or impacted in your body that leads any type of doc to just start testing certain areas to check EACH individual area for overall function and anything that could possibly show those types of symptoms? then putting all those seperate puzzle pieces together to really even begin to define any real condition? i am just kind of shocked that no real specialist(depending upon who you saw and anything they actually did test)has even been able to give you ANY real clues as to what is going on inside your body yet? but seeing that 'right' doc or docs at the right place really IS the bigger key to that. has ANY actual doc given you ANY possible idea at all?
just what are your ongoing symptoms and how long have you had them? and knowing just what IS happening to you that "no one" has ever seen before really would be most helpful to actually know? it just seriously would have to be EXTREMELY rare. FB
