Hi, the Cleveland Clinic/Weston is set up for autonomic testing, to a certain extent. Also, Dr. Chizner, at Broward General, is a cardiologist with autonomic knowledge. Recently, upon the recommendation of one of our members, I saw Dr. Adams at the University of Miami. Of the three, he seems to be the most promising - but the verdict is still out.
In January, I went to Vanderbilt to confirm my POTS dx. I am hoping Dr. Adams can help more clearly define what is going on with both my central nervous system and autonomic nervous system. We have some test scheduled and he ordered a ton of blood work. He seemed very interested in my case and is planning on working on it, along with another UM doctor. I'll see him for follow up to the tests in November.
Good luck and let me know if you have any questions. There are others that may be able to give you additional information.
Cathy, Thanks for your post with the names of local docs. I called CC in Weston and they just said, you can see one of our neuros. I asked who had a specialty or focus or experience with AD/Dysautonomia and the phone went to silence, then they put me on hold, then they said no one.
What kind of specialist is Dr. Adams at U.M. I previously called U.M.'s neuro dept. and asked same question I asked CC and they had just about the same response, but encouraged me to see a neuro there.
I have an appointment at the Mayo Clinic in Jacksonville for November. They have two specialists in their neuro department, along with testing facilities. However, I would like to have local doc(s) for follow up .
Thanks for the info. I had read it prior to posting here. Sadly it mostly points out who is not good - which is very valuable info since I don't want to waste my time and $ only to cause more stress and anxiety. There were a couple of good leads in that thread:
NAPLES FLORIDA (not SE Florida though) - SINAN GURSOY MD
U.M. - Dr. Adams (same as Cathyst mentions above).
I would SO keep my appointment with Mayo Jax. I know they are not "local" but after going from Central Florida to the main Mayo in MN I have yet to find someone who "really" understands things, I have seen Cardio's that treat POTS, only to be told the Tachycardia is the only symptom they "deal" with. I have currently resorted to an internist who was recommended to me, is willing to defer to and consult with Mayo (this was a huge deal for me, I did not travel across the country to not use the information) and knows a bit about AD, and LISTENS.
I can't even get on the waiting list to see Dr. Cheshire (the Jax Mayo neurologist that I know deals with AD and gives the thumbs up or down to get in) after a referral from the "main" Mayo and his looking at my file and saying he would see me in that department. They are so backed up that they aren't allowing anyone onto the waiting list to even schedule an appointment. (Do you know the seconds name?)
My wish is to have an internist here (this new guy seems promising) and travel a few times a year to Jax to get a plan of action that my internist puts into place.
My dream is to have USF (medical school less then an hour away from me) expand into AD, but I don't see it happening.
I spent a full two weeks in MN (started with one but needed more specialists and testing once I got there) and because they all have access to all tests and all notes by everyone you see there... things get caught and other specialists are scheduled on the fly. I still call (and fax recent tests, medication changes, and doctors "ideas") back to the assortment of doctors in MN (I got back the end of April) and they call me back and have spent up to an hour talking to me (I can't get my local doctors to do that, MAYBE a nurse calls back with an answer that rarely makes sense or a go to the ER)
From what you wrote, you should be able to see Dr. Cheshire. When you call the general appointment desk, make sure you tell the rep that you need his/her help to get to the right doctor. Tell them that you need to see a dysautonomia/AD specialist otherwise you would just see any neuro in your community. Explain that the Mayo MN gave you the DX and there would be no point in seeing someone at JAX that doesn't specialize. They were very nice and got me an appt. pretty fast. If the rep can't figure it out, then hang up and call to speak with another rep that understands. Good luck.
I've talked to several people at Mayo Jax, they sent my file to Dr. Cheshire to see if he would see me, Mayo MN called, he approved it and they said there is a waiting list and they aren't even adding people to it.
I've even called his department directly to try and schedule and have been sent to the general appointment desk (in MN once you are in you can "sneak" in by calling the departments directly and getting an appointment)
I don't know what you did but you worked some magic I don't have....
What did you say to the general appointment people? Did you have a referral from a local doctor? When you say you got in pretty quickly what does that mean (with Mayo quickly can be months)
Did they have to review your medical records?
I'm sorry to ask so many questions but I am so desperate to get in there.
Unfortunately the three Mayo Clinics are all Mayo Clinics but they aren't connected like you would think. I have a distant relative that works at the main one and she explained it to me but basically each are autonomous and have different rules (which makes no sense to me, seems like they are reinventing the wheel but there must be a reason)
At this point and with the "flaire" I've been in since August I am about to send everything to Vanderbilt and give them a go ????
This is interesting reading. I am in Melbourne and saw a neurologist last week. He said he wants to send me to Mayo. The nurse called yesterday and said they are making an appt for me. No times yet. I just assumed it will be in JAX. Beter be, anyway. Also be interesting to see which doc they schedule me with. Thanks to you all, at least I now have a name of who I want to see.
For whatever it's worth, I saw Dr. Cheshire a few years ago. I don't want to say he was bad or anything, but I personally didn't get anything out of the visit. He just confirmed that I had POTS and told me to elevate my head when I sleep and do leg strengthening exercises and sent me on my way... I didn't need the re-confirmation of the diagnosis, I wanted help with it. He didn't do any further testing.. had he done more he would know that the POTS I have doesn't respond to the typical basic suggestions (head elevation, salt, etc.). I just went to the Cleveland Clinic in Ohio and I haven't received the full report yet but they definitely looked much further into the condition.
I live in Miami and have not been able to find anyone at all down here that's been of help. That's just my own personal experience though.
Thats what all the darned doctors here have done after looking at my Mayo paperwork until this last "flare" when we have tried two different beta blockers.
They look over the testing and DX I got from Mayo (MN) and then have me lay down and sit up and keep taking my BP and Pulse and then tell me I have POTS.....DUH I flew across the country and had testing done in the autonomic testing lab to confirm this....now what????
I can enough to confirm that you are not the first patient to mention some disappointment with Dr. Cheshire. In keeping with your comment, I haven't heard anything *overtly* negative about the Mayo down there, nor Dr. Cheshire. However, due to the feedback I have received, I think it's fair for me to say that for patients who have the means to get to one of the better equipped hospitals, that is generally my recommendation. (The problem may boil down to a lack of testing resources, I'm not sure? I do have the specific list of what CC FL is lacking as opposed to the OH location but I don't have the Mayo comparison handy.) There is that caveat in there though, as I know that certainly not all ... perhaps not even most ... have the means to get to Cleveland or Mayo MN (or Vandy or NY).
I hope you find out something useful from the reports from CC!
I think I am going to call Mayo Jax and see what their autonomic disorder lab consists of compared to the main Mayo. I am going to ask about tilt table, valsalva, QSART (I may be wrong but I believe Mayo is using QSART instead of thermo testing), and something else they I had but can't remember the name of without looking at my autonomic testing results.
What other tests should I be asking about?
I was told while at the Mayo MN that Jax did not have an AD lab so it was a good thing they turned me down in the first place but since they all seem to be "fractured" when it comes to the 3 locations it could have been bad information.
Mayo JAX called yesterday afternoon & said Dr Chesire is out for the first two weeks of Nov. I made my a ppt for early Dec. I am pretty ignorant on this subject but have read there is no cure. So I have no expectations. Since my lightheadedness on rising is 95percent better now with comp stockings &drinking lots of water, I would not even go. But my wife thinks I will fall over any second, I am going for her. I really want the doc to agree with me that I have the symptoms under control and ease the concerns my wife has. She won't listen to me.
The QSART and the thermoregulatory sweat test (TST) actually test for slightly different things, so one doesn't substitute for the other. To the best of my knowledge, Mayo MN is set up to do both if it is warranted. QSART tests post-ganglionic and TST shows pre-ganglionic nerve function. (Sorry, that gets into neuroanatomy ... a lengthy explanation probably isn't relevant here, but if someone wants to bring it up in another thread, I can try to find a good online explanation.)
Other autonomic/related laboratory tests: heart rate variability, cold pressor, pupillary response, nerve biopsy (for diagnosis of small fiber neuropathy), transcranial doppler on tilt table testing, serum norepinephrine levels on tilt table testing, heart rate response to deep breathing, strain-gauge plethysmography (to assess blood pooling in legs), isometric handgrip, photoplethysmography, radionuclide hemodynamic testing
Not all of these tests are available at any one center; a few of them are redundant and essentially give the same information. (So, for example, there can be slight variance between the exact set of tests available at CC and Mayo.) There's also specific GI testing, bladder testing, etc. that is related to autonomic dysfunction, but that would be more by each of those specialties than specifically under autonomic.
Kav, There is a post here that says Highflyin just called and got an appointment for early Dec. for Dr. Cheshire. I don't know why you aren't having any luck. I spoke to them by phone at the appt. desk and they initially said no. But the rep said to fill out the online appt. form and include in the notes box the info I discussed with her. So, I sent a very brief (bullet point) list of diagnoses and labels that have been given to me by various specialists over the years and the weird symptoms, again a short list of words, not descriptions. Then I received my appointment letter and it was for a different neuro, not Dr. Cheshire. So I called and explained, with concern, that if I was just going to be assigned randomly to a neuro w/o Dr. Cheshire's specialty, then it didn't make sense, since there are plenty of neuro's in my area. I explained that I have a neuro, cardio and neuro-ENT, and they say my problem lies in the autonomic nervous system. They put me on hold, the woman said she consulted with someone else and said it is okay and made the appt. w/ Dr. Cheshire.
So sorry to hear that you continue to have a hard time. Try with the online form, maybe. Maybe you shouldn't mention the Mayo MN (Maybe that's the problem - who knows).
Lala, I hope I get more out of my appt. with Dr. Cheshire than you did. So did you go there, see him and then was sent home? No blood tests, or scans or other tests at all? Did you bring or supply him with results of any extensive testing you already had?
Here's the thing, other than diagnosing a patient, I wonder what else can be done? If dysautonomia can be treated only based on the symptoms and separate systems that are flaring up, what else can be done. My goal is to get a handle on diagnosis. Since I don't have any docs in S. Florida that can make the diagnosis, let alone even know what it is, my goal is to at least find out what Dr. Cheshire says - i.e. to rule it in or rule it out. At least then I will know what is going on for future.
I am still going to pursue my physician's friend's suggestion to see if something is going on with hormone imbalances (can happen to men and women), or some other toxicity. Because, the lingering question is - when one does have dysautonomia, what causes it? I have read everything from A-V, anxiety and stress to virus and who knows what else.
BTW, when I read about vitamin D deficiency on medhelp and others, many of the dysauto symptoms are the same and there are parallels. I was dx'd with low D two weeks ago. Which comes first, who knows?
Parrot, I know exactly how you feel, I want as many answers or definitive diagnoses for everything that's going on with me as possible. I don't know exactly what info will help me as far as treatment, but I figure the more answers I have the better chance I have of figuring out how to best treat it. And I'd love to find out if something specific is causing it... there's a lot of chicken or the egg with this stuff as far as symptoms and everything being interrelated.
I gave Dr. Cheshire my medical info and test results from my cardio and he actually just repeated the tilt test and valsalva maneuver to "confirm" my POTS diagnosis. He didn't do any other testing/scans or anything at all, that was it. At CC in Ohio they did hemodynamics testing where I found out that I have hyperkinetic circulation, another test (not sure which one) showing I have hypersensitivity to adrenaline, and she drew a lot of blood (still waiting for those results). She also did a heart rate variability test, an echo and a couple other tests that Heiferly mentioned. Point being, I don't know if all this will actually help me but with all this extra info I feel like I'm one step closer. I felt like Dr. Fouad (my CC in Ohio dr.) really tried to cover all her bases and I've never experienced that with any other doctor (including Cheshire).
I would definitely specifically ask for all the tests Heiferly wrote above before you get up there so he's clear on what you want. And if you ask before you go you'll also know what their facility's capabilities are ahead of time.
Good luck, I hope you get some more answers!
So now I'm starting to wonder about my dx. Cardio had dx of IST -inappropriate sinus tachycardia. I was there again last week and asked him difference between IST AND POTS, he looked me in eyes and said they are the same thing. Never did tilt table or valsalva. Only tests he's done are EKGs and Echocardiogram. I posted a link in a new threat about an excellent article that described POTS like I haven't seen in any one article anywhere else. It is written by a doctor for doctors, but it is very easy to follow for us laypeople, who, by the way, seem to know more than our doctors now.
No no no no, POTS is definitely not the same thing as IST! I had one dr. tell me that he thought I had IST and wanted to do an ablation procedure on my heart (which is a major deal, I think) which would have been completely unnecessary and dangerous. I've read that patients that have POTS and have an ablation can actually end up worse off. The symptoms of IST resemble those of POTS. Have you been specifically diagnosed with POTS or just IST? You definitely need to find someone who knows the difference. You are so right that us laypeople do know more than most of our doctors about this... how sad is that?? But that being the point, you can't let someone put you at risk for improper treatment and diagnosis because they are unwilling to learn and research something new. As a rule, dr.s look for the easiest explanation, because that's generally the answer. But when you know you don't fit into that category of a neatly packaged clear diagnosis you need to be your own advocate, and advocate hard!!
Yes, LaLa4. I agree with you. Drs. have a few minutes of face time and put patients into the broadest category and treat. Some people get a little better, like me. So the doc just continues to treat me within the same scope of that IST dx. He's changed my meds around 4 time in 4 weeks now and each time, but the problem persists. However, he thinks he is on the right track because the same med (beta blocker), I believe, can be used for POTS. My hear rate varied between 48 and 100 today in a small window of time without any exertion other than standing up, while the BP was "relatively" stable. So since he changed the meds around again, I called about this... and now he says to see electro physiologist in his office. I am going to the Mayo next Wednesday, so I'll wait. The one thing that he had done for me, but only as a bonus, is he has helped the migraine situation tremendously because of the beta blocker for the IST dx. So, the docs think they are making you better and, I have now noticed, they write a note saying patient showing improvement. In my book, that is way different than feeling well. I strongly encourage people to be very careful how to let their doc know if they are feeling better, i.e. saying - I still don't feel well, but have had some mild/moderate/extreme/intermittent/etc. relief. Otherwise they write it down like you are better.
I'm on a NCS group over on Yahoo too and remembered your post. Just saw this there...hope it helps.
>>>Thanks to Michelle I found a doctor who is a cardiologist, EP who is really into POT/NCS. He is in north Central FL and has an office in the Villages and Ocala. He is wonderful. He found out that my pacemaker leads were put in backwords and so much was done wrong. Basically, he has given me my life back! He is awesome Dr. Reiders. He is from UCLA. I wll forever be thankful for this site and Michelle for the help.
You said that you have a list of what the Florida CC lacks compared to the Ohio CC? As you know I recently went to the Ohio CC and the dr. there said she's worked with a dr. Ashner (I think that's his name) that is now at the CC in Florida and thought he would be a good, more local person for me to follow up with. Have you heard anything about this dr.? And how do you feel about the Florida CC for a follow up/maintenance facility? I need to get away from my current cardio!!
I do have the list, though it may take me a couple of days to dig it up ... my brain is really foggy today for some reason and I'm trying to figure out where I stored it after I contacted them.
I've never heard of Dr. Ashner, strangely enough. That could be a good thing, honestly. If there's a dysautonomia-knowledgeable doctor working down there that you find you like, I think CC Florida could likely be a good choice for follow-up and maintenance. The more limited autonomic tests that they do have are probably plenty for what would be needed for follow-up purposes, and so long as you have a knowledgeable and considerate doc "at the helm," I can't foresee any problem.
I'll let you know when I find that list. If you don't hear back from me about it by about Monday or Tuesday of this coming week, send me a message and remind me. My dog is having surgery on Friday and I don't know if I'll get distracted by that and forget my other obligations.
I hope your dog is okay! I'm a huge dog lover and I would be completely consumed by it if my dog were sick :( Don't worry about the list, I'm not going there in the next few weeks or anything I don't think. So just if/whenever you think of it, but honestly don't worry, just take care of your doggy.
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