BelieverEM Posted June 18, 2009 Report Share Posted June 18, 2009 There are several specialists listed in the physician directory, but as someone who has had horrible experiences with most neuros, I'm looking for personal recommendations. I've not yet been officially diagnosed, so I'm looking for that, plus treatment. Anyone in my area-- who would you recommend and/or NOT recommend? Feel free to email me directly with any details. Thanks in advance!Erin Quote Link to comment Share on other sites More sharing options...
jump Posted June 18, 2009 Report Share Posted June 18, 2009 Yes, please share! I'm also desperately seeking someone to treat me in Boston....Erin, if time goes by and you don't find anyone, I can give you the name of my PCP. She's good because she really listens, but she's bad because she really doesn't know anything about POTS. I've done a lot of research on my own, and she has been willing to read my research, do a little herself, and help me out accordingly. She was also able to diagnose me even though when I had my TTT I didn't faint and therefore the specialist running the test said it was negative (I realize now how wrong that was, but at the time it was my PCP who realized it was wrong). She's has been helpful about treating my symptoms, but I don't feel like she's done a great job of really exploring every possible cause - we explored the major potential culprits (lyme disease, vitamin deficiency, diabetes, heart disease) but she hasn't done things like test my hormones or my adrenal function. So that's why I say I could give you her name if you don't find someone better - she's kind, and she won't make you feel like you're crazy for being sick, but her knowledge of this illness is limited. Also, she's based in Nashua, which could be far depending on where in boston you live.I hope someone out there has a good recommendation.... Quote Link to comment Share on other sites More sharing options...
dsdmom Posted June 18, 2009 Report Share Posted June 18, 2009 I see Peter Novak at UMASS Worcester. If you want details and what I really think, send me a private message. The other specialist I know of is Roy Freeman @ Beth Israel in Boston. I have not seen him but have just read about other people's experiences. I don't think you see him much - you see his underlings more. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted June 19, 2009 Report Share Posted June 19, 2009 I'm from Boston and will send you the info.BellaMia~ Quote Link to comment Share on other sites More sharing options...
shoe Posted June 19, 2009 Report Share Posted June 19, 2009 I am also from the area... The kind soul who just diagnosed me is a PCP, but he's now taking a year to do the attending/teaching thing, so I will be seeing his underlings (one he picked out specifically, and he will be in touch). I know the plan is to send me to various specialists as we discover what the dysautonomia is really messing with -- but like many, my track records with neurologists has been less than wonderful, and while this all originates in the brain and I have just as many straight up "traditionally" neurological manifestations of this as cardiovascular/blood flow stuff, I am not sure that I (or the diagnosing PCP) at this point feel real comfortable with the idea of a neuro taking it all on.I haven't seen that particular doc at BI, but I've seen one neuro there and a few at B&W... Let's just say B&W made me suspect that many neuros are very much enthralled by the sound of their own awesome, and my experience at BI did very little to change that opinion, when it was all said and done. The one neuro I've seen who you'd never suspect was a neurologist (he has social skills!) is my sleep doctor. I've found that sleep doctors do pretty well dealing with nebulous/sort of undefined symptom sets and know what to ask and consider and take answers seriously. Unfortunately, he only deals with sleep, and that's only part of my issue. Grrrr.My PCP said that he really likes Ed Fischer as a neurologist... I have no clue if he's experienced with dysautonomias, but he said he is someone who really likes to deal with some quirky neurological issues and teach others about them. (I get this image of the cafeteria staff at the hospital all ducking and running when he comes in because they don't want a lesson in brain anatomy while they're plopping lumpy mashed potatoes on his plate...) Again, I've not personally seen him, but at this point, that particular PCP walks on water for me and he might be worth a check out, just to see? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.