momdi Posted June 27, 2009 Report Share Posted June 27, 2009 When we asked the pharmacy to renew Mike's bb Rx, we got a phone call from a nurse at Mayo Scottsdale saying that they could not do that because Dr. Goodman was no longer there. He's relocated to Mayo Rochester. I don't know if they are planning on telling their patients in a more professional manner than... too bad, can't refill that prescription... but for anyone here in AZ, I wanted to share the news before you get blindsided like this. I was in a store when I got the call, and literally started to cry.She then went on to say that the neuro dept would not be following any POTS patients, so we need to get back in touch with Mike's PCP (a bad choice) or cardiology (an even worse one).Only you folks here can imagine what we went through to find Dr. Goodman in the first place. AndI've been all over every hospital web site in AZ, combing the listings of electrophysiologists and neurologists for anyone treating POTS or OI or autonomic disorders... no luck.Anyone have any ideas? Quote Link to comment Share on other sites More sharing options...
all4family Posted June 27, 2009 Report Share Posted June 27, 2009 I don't have any idea's, but wanted to say I was just as upset when I found out. I hope someone has a doctor to suggest. That would be great. Sorry you found out that way. I found out from potsgirl on here, only one month after my dignoses. I had only talked to him on the phone once, and really didn't know that much about what to do. Suzy Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 27, 2009 Report Share Posted June 27, 2009 Oh momdi, I feel your pain! I went to mayo first thru endocrinology, ran all the same tests and wasted my money. When I called them back to tell them I had dysautonomia, they wouldn't even let me make an appointment. "We have no doctors on staff here you have to go to rochester." That was before goodman came, so I completely missed out on him.I am having the same frustration finding any doctors in arizona. When my cardio had me see an ep cardio at their practice and he said he knew about dysautonomia and seemed real smart. I was so desperate for someone to finally help me, I didn't listen to my own internal warning bells that something wasn't right. So, let him examine me only to get felt me up amongst other things during my exam. I knew something was way off before the physical, and that I should leave, but I thought what if he can help me, so I let him examine me. Yes, he is that Dr. Lewis that was just arrested for feeling up his patient during a pace maker procedure. The victims that have come forward now are in the double digits. So that's set me back, to say the least.I am going to go get a "small fiber neuropathy" test done by a Dr. Saperstein at Phoenix Neurology. When I talked with their appt. person and told her that I'd had a positive tilt table diagnosing dysautonomia, she knew what I was talking about and said yes a small fiber test should be done and told me that Saperstein was the one doing those tests.They may be an option for you. I won't be able to tell you more about them and if they treat pots until I go. You could call them and see if they prescribe what your son is taking.What part of arizona are you in? I'd be curious what type of testing was done to diagnosis your son. The only thing I've had done are the TTT without blood work, and ruled out EDS Vascular. I saw a Dr. Grebe for that test and she deals with a lot of pediatric work, but looks at adults too! Hope this is helpful!BUT WE SURE DO NEED AN AUTONOMIC LAB AND SPECIALISTS IN ARIZONA!!!! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted June 28, 2009 Report Share Posted June 28, 2009 There is a good cardio doc in Tucson that works with POTS patients. His name is Dr. Ewy (Dr. A-Vee) and he's at the Sarver Heart Center at University Medical Center. His PRN, Connie Doner, also does a lot of work with POTS. They are good and caring...He's the director of the heart center. If anyone needs more info, please PM me.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Nauthiz Posted June 28, 2009 Report Share Posted June 28, 2009 i see dr callihan or callahan in tucson AZ, cardiologist he dx me with pots seems pretty smart. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted June 28, 2009 Report Share Posted June 28, 2009 Wow! That is awful that they left and didn't bother to tell you! Goodness! AND nowhere to turn to get the meds? I hope the PCP or someone will be able to help you with that until you find a new dr! Quote Link to comment Share on other sites More sharing options...
momdi Posted June 28, 2009 Author Report Share Posted June 28, 2009 OOps, didn't intend to make it sound worse than it already is. Mike takes inderal and has some refills available for the 10 mg dose, but he typically takes 20 mg daily and it's the 20 mg dose that needed a refill. There were some other negative parts of the situation that I don't need to go into here, but being left with NO meds at all was not one of them.Thanks to all of you for your help. Tucson might just be the best answer for cardio. I have a new doc in Phoenix that we'll try for a primary. We never had much look getting a good primary in Mayo. The last primary tried to "fix" the POTS with a bedtime prescription of Xanax (which Dr. Goodman totally nixed). According to the primary, that would cure his sleep problems so that he could get up in the morning and get back into school. The "better to laugh than cry" part was when that doc advised Mike that whenever he had difficulty getting up in the morning to just force himself to stand upright. I guess on the premise that if you're standing you can't be asleep at the same time . That would keep him awake! Orthostatic intolerance anyone??? Duh! Quote Link to comment Share on other sites More sharing options...
Lgamez3 Posted June 29, 2009 Report Share Posted June 29, 2009 I just started seeing Dr Gaitonde he is a cardio EP out of Cardio vascular associates of Mesa. I have only seen him once so far, so no real impression other than he is very eager and thorough and wants to "try some new things". He came from Indiana. He said he thinks that there is more too it than POTS and NCS for me. I will keep ya'll updated. I am bummed about Mayo.....I was wanting to be referred there Quote Link to comment Share on other sites More sharing options...
Maxine Posted June 29, 2009 Report Share Posted June 29, 2009 I'm so sorry, I can only imagine how shocked you must have been. I would cry too, especially since you will need to start all over again on your search for someone to care for your son's ANS problems. I was sooooo fortunate to have Dr. Grubb right in my area----actually only a half mile away. However, I'm still on the search for a good neurologist for my neurological and spine issues related to the EDS. I've had to travel out of town for EDS docs.I hope you can find a neurologist or cardiologist knowledable on the ANS close to you so you don't have to travel.You and your son will be in my thoughts and prayers.Maxine :0) Quote Link to comment Share on other sites More sharing options...
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