Eillyre Posted November 24, 2004 Report Share Posted November 24, 2004 Hi! I'm new to the forum, having just been diagnosed with POTS this past September. The doctor who gave the diagnosis has had limited experience with POTS, so he recommended I see a specialist. NIH has been taking too long, so Mayo was suggested. Any advice? Emotionally I'm doing pretty well, but it's frustrating seeing my symptoms only continue to worsen bit by bit without many effective ways to combat it. So far meds have either been ineffective or made my symptoms significantly worse. I was a professional dancer until this came on -- now I'm having difficulty just getting breakfast ready for myself in the mornings. I'd like to try to get back to more normal life if possible. Thanks for your input and wisdom!Angela Quote Link to comment Share on other sites More sharing options...
Gena Posted November 24, 2004 Report Share Posted November 24, 2004 HI Angela, and welcome to the forum. POTS is definitely frustrating, scary and physically and emotionally draining! (and that's putting it mildly)It often takes a while before finding the right combination of treatment methods to get functioning again. I'm assuming you're already doing the basics such as extra fluids and salts, compression hose, perhaps licorice root? Don't give up hope though. There are many who have been able to get back to their love of sports, dance, running, etc., --with a few modifications of knowing their new limits! I was never an "athlete" per se, but I enjoyed working out 5 x week, hiking, raquetball, swimming, etc. I am now able to do those things again, but my tolerance level isn't what it used to be. We learn to adjust and be a little more forgiving of ourselves.Okay, back to your question about Mayo...I went to Mayo in Jacksonville in Sept. of this year (2004) and saw a cardiologist by the name of Dr. Fred Kusumoto. I am going to make a separate post about him, b/c I think he was really wonderful and others might want to know as well (see that post for more details on him). I also saw Dr. Cheshire (a neurologist at Mayo) and he ordered a great set of tests - a complete work up - but didn't seem as knowledgable about the nuances of POTs as Dr. Kusumoto, or maybe my case was just too baffling! I hope you find the treatment options that work best for you soon. This forum is a great resource too. Quote Link to comment Share on other sites More sharing options...
Eillyre Posted November 24, 2004 Author Report Share Posted November 24, 2004 Thanks Gena! Haven't tried licorice root yet? How does that work? Sorry, I'm still trying to get a good handle on what the syndrome is, let alone all the the treatments for it. I'm glad that you're having such a positive experience with Dr. Kusumoto. Sounds like someone to look into for me. And thank you for relating your experience with activity -- it was such an encouragement! I have yet to meet anyone else in my area who has experienced, let alone heard of, POTS not including the diagnosing MD. After spending 8 hours a day dancing, it's hard to do so very little. I'm just taking it one day at a time and being thankful for what I can achieve. God is merciful and so very generous! Quote Link to comment Share on other sites More sharing options...
justme Posted November 24, 2004 Report Share Posted November 24, 2004 Our experience with Mayo was that they seem really good with the diagnosis phase of everything and explaining what is happening, but didn't seem to be too interested in on-going care. It was like they solved the riddle and it was time to move on. I'm sure that's not indicative of their entire care system, but that was my experience. Mayo overall is great. They saved my life and my father's (cancer) and have very good doctors. Sometimes bedside manner can be lacking, especially in the neurology dept. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 24, 2004 Report Share Posted November 24, 2004 Where are you located? Did you look at the list of doctors on this site? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 24, 2004 Report Share Posted November 24, 2004 And yes, Gena is so right about being able to get back to active things. I was so sick I was bedridden in 2002. Now I can climb three flights of stairs multiple times at work with barely a thought; I do yoga, walk, run all around with my toddler, etc. Yes, I have to be more forgiving of myself and there are days when exercise is harder, but overall I can be active and expect that I will continue to improve my fitness over time. Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted November 24, 2004 Report Share Posted November 24, 2004 Just me is correct. Mayo did a great job with diagnosis but their follow up is not wonderful. I saw Dr Low and was really pleased but when I called him several times with some pretty serious questions I never received a return call. He did return a call once after I left a message that my new neurologist thought that he ( DR Low) didn't know anything and that I didn't have dysautonomia.Dr Low called back within an hour telling me to fire my neurologist. Anyhow, most places are really busy and are not great with follow up so I would still recommend Mayo if you need a correct diagnosis.GayleP Quote Link to comment Share on other sites More sharing options...
yogini Posted November 24, 2004 Report Share Posted November 24, 2004 Angela,Welcome to the board. I understand your frustrations about POTS and hope you feel better soon.I went to Mayo and had a good experience. I would agree with the other folks and add that it's very draining/time-consuming if you don't live nearby. Also, it's not easy or quick to get an appt there. My biggest current problem is that I can't quite seem to adjust my medicine to bring my BP and HR in check. I don't really have a local dr to help with this and Mayo can't help either. In addition to going to Mayo/NIH, etc., you would probably benefit if you are lucky enough to find a good POTS doctor in your area.-Rita Quote Link to comment Share on other sites More sharing options...
Eillyre Posted November 25, 2004 Author Report Share Posted November 25, 2004 Thanks for all your responses! It is especially encouraging to hear that you were able to get back to fitness/activity. It would be such a joy to be able to dance again! I live in mid-NJ, not far from Princeton, and am currently still looking for a POTS doctor in the area. I haven't checked the list of MDs at this site, but will do so as soon as I finish this posting. I'm glad to get your feedback on Mayo. Since this is all so new, I'm not entirely sure just what to expect from my visit there (or any other hospital for that matter). I'm going to make a separate post about that. Thanks for your help and wisdom! Quote Link to comment Share on other sites More sharing options...
Merrill Posted November 25, 2004 Report Share Posted November 25, 2004 As I now understand it, there are two Mayo Clinics--Rochester, MN and Jacksonville, FL. I just thought I'd throw this out there; a lot of people say they go to Mayo but don't always specify which one! (Dr. Low, who is considered one of the leading POTS researchers, is at Rochester.) happy thanxgivingm Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted November 25, 2004 Report Share Posted November 25, 2004 Hi Angela - My name is Beth - I live in mid NJ also - about 25 minutes from Princeton, I live further South though, closer to the Freehold/Englishtown area. I was diagnosed in 2002 and in terms of Drs. in our area, my cardiologist is an electrophysiologist who is affiliated with St.Peters & UMDNJ/R W Johnson in New Brunswick-Hes ok,personality could be a little better but there is another cardiologist at the practice that I could give you his name if you need it that has a better personality and diagnosed me,even though he is not the one I see at the practice now. My neurologist is up at Columbia Pres. Neurological Institute in NY, Dr. Louis Weimer, he specializes in dysautonomia but you have to pull information out of him-he knows alot but if my symptoms get bad again(right now they aren't good,but they could be alot worse)I am going to try to see Dr.. Robertson at Vanderbilt University Hospital in Nashville Tn. He is supposed to be very good and has been doing research on POTS for over 20 plus years. I hope you feel better soon - I wish we had a support group here in Central NJ for POTS-Most people never heard of it. If you want to email me, my email address is on the meet others posting. Happy Thanksgiving. Beth Quote Link to comment Share on other sites More sharing options...
goldicedance Posted November 25, 2004 Report Share Posted November 25, 2004 I would like to add that the Mayo doctors are superb for diagnosis. However, once you are on their "rolls," they seem to respond quickly to your doctors' telephone calls to them. I think that your PCP is the best intermediary between the Mayo and you. Quote Link to comment Share on other sites More sharing options...
yogini Posted November 25, 2004 Report Share Posted November 25, 2004 I think there's a Mayo in Arizona too. Funnyfrog, thanks for the tip on Dr. Weimer. And happy Thanksgiving to all! Quote Link to comment Share on other sites More sharing options...
StaceyYount Posted November 25, 2004 Report Share Posted November 25, 2004 I would agree that Mayo can diagnose you but the follow up care is bad. I was diagnosed there in 1997. Which was a relief to know what I had but then that was really all they did for me. The other thing that is nice is that all the doctors there seem to talk to one another and read each others reports which is a big help with this crazy thing we have.Angela,I too was a dancer, ballet and miss it terribly. My husband still dances and is in rehearsals for Nutcracker now. So I understnad how hard it is to go from dancing all day and then not being able to stand up. I hope that soon we will be dancing again!!!!Stacey :-) Quote Link to comment Share on other sites More sharing options...
friday Posted November 28, 2004 Report Share Posted November 28, 2004 I wish we had a support group here in Central NJ for POTS-Most people never heard of it. . Beth I'm also in Central Jersey. If anyone wants to start one, I'm in.Unfortunately i can't start one because I'm just not strong enough to run one.I belong to a CFS group at yahoo, where I've tired to spread the word about POTS. I know a lot of people with CFS also have POTS. The problem I think is nobody makes them aware of it because as you say, nobody's has heard of it. Maybe POTS isn't as rare as they think. If doctors don't know much about it, if anything, the CFSers they are treating might have it and not know it. Just a thought.Sue Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted November 28, 2004 Report Share Posted November 28, 2004 hi Sue- I have no idea how to start a support group and don't have lots of energy either, but I'd be willing to give it a try if some one could give me pointers on how to do it -I know nothing about starting a support group or what to do first,but I think it would be a good thing for us to be able to share our experiences and help each other. Anyway, have a good night. You can email me further if you'd like-my email address is at the meet others program on this website. Beth Quote Link to comment Share on other sites More sharing options...
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