Guest maia Posted September 21, 2011 Report Share Posted September 21, 2011 well, i just had autonomic testing with dr novak. before i left the testing room i had a dx of autonomic neuropathy, a handicap placard app approved, and he said he would try to get me in for an office visit in the next few days. i was rather impressed. he did not however give me any detailed info during the testing-he was quite pre occupied with the instruments-but was willing to answer a couple basic questions, ordered some labs, and suggested a med he would like to try me on. overall i was impressed and found him to be a very pleasant-although preoccupied- man. his assistant was very pleasant but would offer no info other than what he was doing. the whole thing seemed rushed but i was there for 2 hours. they did let me rest as needed between tests, and let me down from the table when i told them i couldnt take it anymore. one thing to note is that during the vasovgal or baroreflex(cant remember what exactly its called) breathing test, i apparently failed instantly, lol... blowing, blowing, blowing... and as soon as i started to feel dizzy, swimmy head, chest tightness, tachy, etc.. he asked me if i was dizzy... so apparently that result shows up instantly.results from what i saw of numbers... hr rose, as hr rose, bp fell, failed breathing aspect, asst would give absolutely no info about sweat test, and i was told i didnt need the biopsy now but it might be a good idea at another time (not sure if that was due to time constraints)also, someone-i forget who, apologies-mentioned he was a different person in the lab and office.. im wondering of peoples opinions about him and his practice. he also suggested a doctor in boston as the best around for pots-forget his name also. ill post when i get it again. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 21, 2011 Report Share Posted September 21, 2011 Always glad to hear a positive experience!! I hope you'll keep us posted on the med he wants to try you on, etc. Quote Link to comment Share on other sites More sharing options...
mwise Posted September 21, 2011 Report Share Posted September 21, 2011 Hi Maia,So happy everything went as well as expected and you got some answers. Sounds like Dr. Novak will have you moving hopefullly in the right direction. I am curious to know what medication he would like to try. I am also anxious to hear what treatment plan he will recommend for you. Keep us posted Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted September 21, 2011 Report Share Posted September 21, 2011 Glad things went well for you...or that you "failed" in their presence I hope he is able to help you figure out a good treatment plan. Yes, lab rat he is. He loves his lab and all his equipment. Outside of the lab I found him just as pleasant but not distracted by his toys. I'm also curious what med he started you on...I hope your appt later this week goes well Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 21, 2011 Report Share Posted September 21, 2011 Thank you, thank you, all. i forget the name of the med but it began with an 'M' and it is something to activate the nerves... id remember if i hear it, so feel free to toss out names... Im a little gun shy of drugs though so im going to ask him to follow me or a trial of ALA first to see how that works... that is, if he still is of the same opinion after going through all the results when i see him again...if anyone is wondering, i recommend him-at least for this bit, and ive worked with md's for 20+ years and dont recommend many.fyi.. he did say right out that POTS can be caused by bacteria and viruses also so if someones POTS isnt a dysautonomic issue, he cant help beyond testing to confirm a dx. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted September 21, 2011 Report Share Posted September 21, 2011 Maia, was he talking about mestinon? (it's also called pyridostigmine) Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted September 21, 2011 Report Share Posted September 21, 2011 I'd guess it's Mestinon. That seems to be one of his first drugs to try. He put me on it the first time he met me, before he did any testing. There is a lot of great info on this forum about everything POTS related and then some. Utilize the search option to find previous threads for any subject. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted September 22, 2011 Report Share Posted September 22, 2011 I thought it ended in 'ate' but i could be wrong. Could be mestinone. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted September 22, 2011 Report Share Posted September 22, 2011 Was it Roy Freedman at the BI?BellaMia ~ Quote Link to comment Share on other sites More sharing options...
dsdmom Posted December 21, 2011 Report Share Posted December 21, 2011 I see Dr. Novak.I've seen another local group but had a bad experience. They are quite misinformed about some aspects of dysautonomia and DEFINITELY KNOW NOTHING about chronic fatigue syndrome. The guy I saw had the arrogance to tell me one thing to my face and then write something completely differently in my notes - when I got the notes and showed them to my pcp she about lost her mind. He had the balls to say that I did not have dysautonomia - despite extensive previous testing - and this was also before he did his own testing. Once he did his own testing he said I did have it...but then the fellow I saw told me I just needed to start running. I explained that I had cfs - IMMUNE DYSFUNCTION - and that I had lots of abnormal immune function issues (as tested by a well-known cfs doctor) and that exercise was proven to make things worse. According to him - ha! I just need to run. The dr also told me to stop taking mestinon, which novak prescribed and really has been the only thing I can a) tolerate and that has helped.Novak is pretty good - just a head's up that his office is notorious for not responding. So if you need things in between appointments it can be trying. Just try to get things done @ the appointment. Quote Link to comment Share on other sites More sharing options...
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