Do You Ever Feel Like A Ping-Pong Ball?

[Tobiano]

Do you ever feel like a ping-pong ball, being bounced around from one physician, specialist, clinic, and hospital to the next? Too ‘neuro’ for the cardiology gang yet too ‘cardiac’ for the neuros? Too complex for the GP yet ‘not life threatening’ enough to keep the specialists’ interest? So many times I have asked questions and been told, “I don’t know, you will have to ask X” about that”. I love when X turns out to have been the physician who referred me in the first place because he/she was unsure of the answer and wanted me to clarify with someone else! Part of this I have brought on myself, because I am still ‘shopping’ for physicians to determine who I ultimately feel comfortable being followed by. Part of this is just the complex nature of this syndrome, which is generally not well understood. It doesn’t make it any less frustrating though. Thank you for listening to my rant

[Guest Alex]

Unfortunately I do. I have only found one neuro so far who had a decent understanding of cardiology, but I am yet to find a cardiologist who has some decent neuro background. I am fortunate to have an internal medicine specialist who can tie up some loose ends every now and then; he is not a POTS dr, yet he diagnosed me and has been the one to follow me and help me the most.

I am still shopping for drs despite having found some (half) decent ones lately. I'd rather have a dr who can see and understand the whole pictures instead of bits and pieces, or I wouldn't mind a team of drs who know how to collaborate with one another instead of passing me around and making me chase my own tail.

Alex

[Guest Hanice]

Yes yes yes yess.. I have been to more than 10 different doctors in less than two years. It's ridiculous! I hate it. No one cares about us. And the ones who would care just too far away!

[lejones1]

Yes, so frustrating. I've seen 24 doctors in the past year. I guess if they can't figure it out, they'd rather pass you on to someone else than have to look into something difficult. The only thing worse than being referred on to another specialist is being referred to a psychologist! I thought that getting a POTS diagnosis would make things a bit better, but it hasn't. Apparently it's too much to ask to want to investigate the cause of this illness that has made me pretty much housebound.

I also get frustrated trying to explain to my family how tiring this is. I know I have a lot of free time to pursue doctors but it is emotionally exhausting to be tossed around between a bunch of doctors who, at best, just admit they don't really understand what's going on with you. And to repeatedly get your hopes up and then just be disappointed.

After all that whining though, I do have a positive note! I had an appointment with a neurologist who specializes in POTS and it was great - the whole office staff was really kind and gave me big

cups of water and was so understanding about needing to lie down, etc. It was only one appointment so I'm trying not to get my hopes up, but I am optimistic that are there some good ones out there!

[Joann]

Yes understand what you are saying. I don't even know how many doctors I have seen in the last year and half. Some of those doctors I have been referred to and some I shopped around and yes, I am still searching for a doctor or team of doctors that will really be able to help. I have seen many nice doctors that have told me that they know something is wrong, but that is not in their realm. And I have met some awful doctors who just don't care.

It is so frustrating and ping pong ball is a good way to describe it.

[badhbt]

Ahhh the ping pong treatment. I know what you are talking about. I have heard that is not my speciality a lot!

[cupcakemomma5]

Oh my goodness! Ping Pong treatment.....

21 days in the hospital last august and I think I had every specialist look at me and then discharge me, only to be sent to other so called specialists.....lol

Only to find out that there are only 3 real ANS specialists in Canada.....and one complains about getting everyone else's "problem cases", so he just collects out of province fees and says your fine.....(sorry, little bitter...lol)

[Freaked]

Yep. Where I come from POTS is barely a thing, so if your BP isn't always low when you stand then docs have no real suggestions. Surprisingly though, I've been in to one of the big local hospitals so many times with chest pains and palpitations that they're taking an interest. I'm due to start on fludrocortisone and they said if it hadn't started to make a difference by the end of the week to come back in and they'd look into things more. For free!

[bebe127]

Yes, yes, and yes here as well. First EP dx me, but told me he doesn't treat POTS and doesn't know of any that do, referred me to Neuro. Went to neuro, he said that my problem is cariologic, not neurologic and suggested going back to the referring EP. Went to another EP in the next county up (a supposed specialist in POTS), told me that he concurred with original dx, then added that I only have a "mild" case since I don't faint. Told me all my symptoms were not POTS related (mind you, all the symptoms I described to him were found on the paperwork that the original EP printed out for me from this very site), even told me that my chest pain/discomfort had nothing to do with heart. His brilliant recommendation was to see a psychologist and to find a dr. closer to home to treat me. Went to psychologist, what a joke. Finally found a GP that at least has other patients with POTS that he treats. He has been treating me for 2+ years now, although my other symptoms confound him and they are not willing to test me for underlying causes or anything other than "routine". He actually referred me to a cardio for the chest pain/discomfort, I emailed the dr. to see if he was familiar with treating POTS, he actually responded, but told me he didn't and referred me back to the dxing EP...yeah, the one that just tells you you have POTS, but doesn't do anything about it.

I am at a point now where I am so physically, mentally, and emotionally blitzed that all I can do is try to do what I can when I can. I'm not going to see any more dr.s in the near future. I have come to the realization that I may never know the 5 w's in my case, but I can't let that stop me from trying to live my life.

My Ping-Pong is all dented now and I have chosen to exchange it for a nice, shiny new one. At the moment, I'm just on the table, leaning up against the net until I get the energy up to roll one way or the other

So sorry you are having to go through this, and unfortunately you might find that this is the way of this illness. I do hope you find some answers and get the treatment you need.

Be well,

Bebe

[Tobiano]

Hahah the Ping-Pong treatment. You guys just made my day! Alex, do you have a systematic review on that one? At least here we all have empathy for everyone else that is going through this.