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Everything posted by momdi

  1. Dani, I remember Dr. Goodman saying that even if the HR comes down, very often the other POTS symptoms will still not improve. So, HR is not definitive. As we all know, HR is just one manifestation of the whole disordered mess that is POTS - it's just the one that is measurable and that we look at. Any change in meds by Goodman? He tried an SSRI for Michael, but couldn't decide if he was better or worse for it, so that's stopped for now. Michael sees him next month. Tenormin and Clonidine is all atm. Dianne
  2. Dani, Michael is 29 years old, ill since age 8, diagnosed at age 16. We are applying for disabled child benefits (disabled before age 22, if I remember correctly), although they are also considering benefits on his own. I don't know how, since he doesn't have much of a work record - a few months here and there. My understanding is that the decision affects both circumstances.
  3. Michael has been given a hearing date of Aug 30th here in Phoenix AZ. Can't recall when we filed the appeal, but not over a year. Dani, did you get disability in AZ? Congratulations to ACB!
  4. Mayo's policy on Medicare is on their website. They don't accept it, but they do, if that makes any sense. If you are medicare, you will end up paying more out of pocket than if you're not, but they give some pretty detailed examples, which make a lot more sense than trying to describe it in the abstract. That said, that policy applies to specialists. Mayo hospital accepts medicare. Mayo primary care does not accept medicare. Hope that helps rather than adds confusion. Check out their website for full and current info.
  5. Thank you for that great report. It's hard to explain to people how Dr. Goodman approaches his patients. I think you did a pretty good job. I usually advise people to have all their story ready to present as concisely as possible, because Dr G listens like no other doctor I've ever met. And I'm a retired nurse, so I've known a lot of docs. At first, it's a bit disconcerting. Ok, a lot disconcerting. He just listens. Sounds as though he did a pretty thorough job for you. Best of luck with your future. i admire your thoroughness and determination.
  6. Lillybits, be very careful and do your research on health insurance before moving. AZ is one of the worst states - if not the worst. We're the only state that doesn't have medicaid. We have ACCHHS instead, and as a disability atty told us, it is NOT about giving you access. They've hugely cut back on the funding for it, so adult non-custodial parents can't even get it. It sounds as though you would qualify with your daughter, but be aware that it is very limited. Someone here mentioned that Mayo takes medicare. Yes they do, though they do not contract as a provider, so they don't accept their
  7. Yep. Dr. Levine I think is the head neurologist there. If you have autoimmune issues, might be a good way to go. I have a friend whose daughter sees him (not dysautonomia) and loves him.
  8. Lilly, Mayo Rochester is good at doing the diagnostic workup, non-existent with follow up. However Goodman in Scottsdale does excellent follow up. Only problem is getting an appt. He's getting way too well known . Lemons, Good luck with your appt. Be prepared for the opportunity to have a doctor really listen to what you have to say. Let us know how your visit goes.
  9. Dani, Don't you see Dr. Goodman? I'm curious if you've discussed this with him and what he says. Dianne
  10. Michael saw Dr. Low straightaway, but was referred to Mayo by his electrophysiologist with a diagnosis of POTS. He never saw an internist or any other dept. That was in 2006. The hotels there are awesome, especially the ones connected to Mayo via the tunnels (the only way to go imo). The hotel staffs are all "Minnesota nice" and you don't have to give a checkout date when you book. They understand that you are there as long as the testing takes.
  11. Michael complained of his first symptoms at age 8 - as though he was walking in a tunnel, with everything distant. Looking back, there were signs of POTS at least back to age 4/5.
  12. When Mike was younger, he would say his "brain hurts". Good description?
  13. Hi Naomi, Sorry to say, worse, much worse. But I think that has more to do with the type of pots than anything else. He has the hyperadrenergic form and, looking back, has probably had it all or most of his life. It's hard, that's for sure. You are fortunate in that doctors now have a clue. Mike was misdiagnosed with cardiac arrhythmias (though that wasn't too far off), and later, seizure disorders. It was only when he was 16 that I came across some publications by Dr. Grubb in Toledo and thought pots might be a possibility. Confirmed by a tilt table test at Childrens Hosp in Chicago. Though
  14. From the Cleveland Clinic... "A PET scan can measure such vital functions as blood flow, oxygen use, and glucose metabolism, which helps doctors identify abnormal from normal functioning organs and tissues. The scan can also be used to evaluate the effectiveness of a patient’s treatment plan, allowing the course of care to be adjusted if necessary. Currently, PET scans are most commonly used to detect cancer, heart problems (such as coronary artery disease and damage to the heart following a heart attack), brain disorders (including brain tumors, memory disorders, seizures) and other central n
  15. When Mike was young and they thought he had a seizure disorder (rather than POTS), they did brain scans - a PET and SPECT - which show the glucose activity of the brain. It was abnormally low in one area, which at the time, they thought indicated the area of the "seizures". We later were told that POTS creates a sort of physiological shunt in the brain that does actually diminish the brain flow. And we were told that's the cause of the brain fogs.
  16. Dani, This was an appt for your mom? Have you seen him yet for your own situation? If your mom hasn't had any treatment, or even a diagnosis yet, then what he'll start with her isn't necessarily the same as where he'll start with you. Be patient and wait to see what he'll recommend for you. It's a good thing that you had this preview so you can be prepared for your visit with a concise list of information as to what your response was to each of the meds that are on his starter list. Unfortunately, imo, there aren't any great new things available, just a lot of tweaking of what we already know.
  17. Issie, Did you try Biltmore cardiology? They might be more willing to play around with different beta blockers? Dianne
  18. Hi Bren, I can feel your frustration. Have been to the ER with my son and it's no fun, that's for sure. As a former ER nurse, I just want to say that you can't expect a thorough workup in the ER. I'm not quite sure of how to word this so that it's the most helpful (one time I tried to do that here and got "yelled" at), but I'll give it a try. The ER is there to find anything that is "emergent" - that is, anything that is dangerous right at the time or will become dangerous in the next 24 - 72 hours. They are not there to find the deep cause of anyone's problem. (please don't yell at me people
  19. My son had totally bizarre sleep for years which has improved greatly with Clonidine. Although he can take it twice a day, he only takes it at bedtime. I see a lot of people here take it. His vitamin D was also very low.
  20. At Mayo Rochester, Dr. Low calls it the "shake and bake" test.
  21. Mayo asks for cash up front if they do not take your insurance. It's easy to find out if they do. Just give them a call. Believe me, they know their financial issues. Mayo does have primary care docs, but I think they're only used for "local" patients. If you're coming in for a work up, you'll see the scheduled doc, and he will refer to other Mayo specialties if he deems appropriate. In our many experiences in Phx, the docs do not communicate well. However, their computers communicate well:) All the information is immediately in the computer for any Mayo doc (or you, through medical records)
  22. Hi Caroline, What a challenge you have in front of you, but be encouraged and be strong. Dr. Goodman is surely the most patient doctor I've ever met (and I'm a nurse, so I've met a lot). He will give you an opportunity to say everything that you need to say before he starts to speak, so have your thoughts prepared, but I'm sure that you will. Let us know how it goes, Dianne
  23. My son Michael seems to be more uncomfortable than most with the eye drop dilation done at the eye docs. One eye doc seemed very unsurprised about this... said that would be the case with an autonomic condition.
  24. I could meet at 130 or later on the 9th.
  25. Great news Issie. Maybe we'll run into you there. We have a May appt too Eager to hear what you think of him. IMO a very different experience from any other doc. I've never seen anyone listen so patiently, though it took us a while to get used to it. While he's listening he doesn't say much (ok, more like nothing). Good luck!
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