guy123 Posted October 2, 2008 Report Share Posted October 2, 2008 Basically he told me he believes there is an adult variant of PANDAS is doing a study on adults who had acute onset of tics/anxiety. I asked if I could be in it and he said I was too old (I'm 27). I asked if he could help me or point me in the right direction to get some more info and he ignored it. I asked if he had any recommendations for doctors in the Chicagoland area who could help me diagnose or rule out PANDAS and he said no. What kind of doctor can't help you and can't recommend anyone else who may be able to? Or even recommend a study or something? Seriously. I was kinda surprised since everyone on this forum seems to love him. Anyway, anyone here have any good Chicago recommendations? My current neurologist is awesome but doesn't even know what PANDAS is (I guess that's better than dismissing it as "not real" tho, right?). Link to comment Share on other sites More sharing options...
Chemar Posted October 2, 2008 Report Share Posted October 2, 2008 I was kinda surprised since everyone on this forum seems to love him. lol Guy based on some upsets here tonight I can emphatically say not "everyone" I am surprised tho that you were given such a brush off and so do hope you will find someone who can point you in the right direction Link to comment Share on other sites More sharing options...
pmoreno Posted October 2, 2008 Report Share Posted October 2, 2008 He probably doesn't know much about the adult onset because he specializes in kids and its very different for adults. Do you know what triggers your symptoms? Is it strep? It would seem odd if it did because most kids outgrow that around 13. Did you have a recent vaccination? Some young adults react strongly to vaccines and start having PANDA like symptoms. If you can't find someone locally you might have to consult with someone out of town. We're in michigan and until we heard about Dr. K, we were having frequent phone consults with a doctor in Florida. They're called Creation's Own - the P.A. is awesome (and not as expensive per phone conversation as the senior MD's) He is very knowledgeable and might be able to give you some answers - His name is Scott Smith. They now do a blood test (kind of expensive) but it's called D8-17 and it will identify the antigen causing the problem with your immune system (like strep) and it also determines whether (and how much) the neurons are sloughing off myelin protein which would indicate that there is an autoimmune response going on. Basically he told me he believes there is an adult variant of PANDAS is doing a study on adults who had acute onset of tics/anxiety. I asked if I could be in it and he said I was too old (I'm 27). I asked if he could help me or point me in the right direction to get some more info and he ignored it. I asked if he had any recommendations for doctors in the Chicagoland area who could help me diagnose or rule out PANDAS and he said no. What kind of doctor can't help you and can't recommend anyone else who may be able to? Or even recommend a study or something? Seriously. I was kinda surprised since everyone on this forum seems to love him. Anyway, anyone here have any good Chicago recommendations? My current neurologist is awesome but doesn't even know what PANDAS is (I guess that's better than dismissing it as "not real" tho, right?). Link to comment Share on other sites More sharing options...
guy123 Posted October 2, 2008 Author Report Share Posted October 2, 2008 Do you know what triggers your symptoms? Is it strep? It would seem odd if it did because most kids outgrow that around 13. Did you have a recent vaccination? Some young adults react strongly to vaccines and start having PANDA like symptoms. My symptoms are always there. They don't really wax and wane. Well, they wax and wane, but it's over periods measured in minutes, not weeks/months like most tic accounts I've read about. No vaccinations around the time my symptoms started, but there were three things that may have caused it: - I had just gotten over mono (combined with a hellish sore throat, which I assume was from my swollen glands in my neck... the size of golfballs) - I had just started allergy shots (never finished treatment because my tic started) - There was a scandal about my high school being filled with toxic mold and lots of teachers/students were getting very sick. But my tic just appeared out of the blue one morning. I'd say there was a spike in OCD around that time, too. I've always been a little OCD, but it got bad around that time. Link to comment Share on other sites More sharing options...
EAMom Posted October 2, 2008 Report Share Posted October 2, 2008 I'm sorry your experience wasn't helpful Guy123. I guess I should have warned you...physicians are so specialized these days. Since Dr. K. is a pediatrician, I'm not surprised he couldn't help you much (being the super old guy of 27 that you are.) It was worth a try. ...at least he didn't laugh at you and tell you only kids get PANDAS. You got some kind of an inkling that adults might possibly get PANDAS. Link to comment Share on other sites More sharing options...
Chemar Posted October 2, 2008 Report Share Posted October 2, 2008 a referral or some kind of direction would have been nice tho Link to comment Share on other sites More sharing options...
guy123 Posted October 2, 2008 Author Report Share Posted October 2, 2008 a referral or some kind of direction would have been nice tho That's what I'm saying!!! I even told him he came highly recommended to me by name! I got PMs from people saying he definitely DOES see adult patients. Hmm. Maybe he just didn't like the flawless grammar in my emails Link to comment Share on other sites More sharing options...
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