just wondering if he has actually been to see a real rheumatologist at all? the one HUGE thing mine did for me when we were trying to figure out whether i had RSD or some insane type of inflammatory type of more rheumy issue within my very swollen and very HOT knee, is this huge four page in depth study they did by taking like five seperate tubes of blood from me at my very first appt and them sending these to places like in kansas(i live in MN) and other specific labs thru the US for very in depth blood work just to try and rule in or out ANYTHING of an inflammatory nature. this was by far the most in depth and comprehensive blood work i have ever had in my life, it tested for like 50 different possible inflammatory type problems/conditions? and nothing came back positive so my RSD dx was kind of 'it'. but if he is showing any types of actual 'markers" for anything of an inflammatory nature/immuno related, he just needs much more in depth and definitive types of testing done just to better define what actual 'markers" may be involved in his condition, ya know what i mean? the testing he has had DID show something, its just a matter of really doing that more in depth type testing that will give him the real underlying Dx. if he has not yet been to a rheumy doc, he most definitely needs to see one now. or if he simply has not had EVERY single imaginable type of possible inflammatory condition ruled out with that like four page in depth study, THAT truely is the best type of test he could possibley have right now.
i just could not believe everything that this one blood draw tested for and how many different places around the US that just do very specfiic types of testing for certain things were actually involved here. really in depth. that is what he needs the most right now. in depth testing and definition of what the so called 'markers" are all about too. have they actually MRIed any of the more painful joint areas to look for any indications of underlying disease processes going on or anything that would show a possible symptoms of a specific type of condition?
unfortunetly, truely dxing any real condisition or disease process just takes in most cases, alot of testing of various types and just ruling out the possibles along the way til something definitive gets "hit" upon. the fact that at least "something' is showing at least gives his doc something to work with or towards. thats alot more than some people have when trying to find out whats wrong with them. but a rheumy doc will probably be his best bet here, or getting to like a university type of teaching facility if one is actually within driving distance may help more too since alot of people seek help from these types of hospitals when they feel they have run out of any other options. i and my son spent alot of time at our local U of MN here in MN just becasue what he had and what i had were very very rare condtions. i was not getting ANY true accurate types of info til i got to the head of neurosurgery at the U here. that was the doc who simply had the most experience with my particular condition. i do wish him luck with this. just make certain that they have actually run every imaginable type of test like i had at my rheumy visit. trust me, they can test for sooo many possible conditions with that one big all inclusive type of test like i had. please let me know what you find out. FB
