How Do You Get A Diagnosis Of Pots?

[TCP]

I have just seen a cardiologist who was pretty clueless. He didn't know anything about the nervous system, let alone Autonomic Neuropathy. I gave him a detailed run-down of my symptoms which point to a problem with my heart/BP etc and the symptoms which I endure daily and he dismissed them all. He only agreed that I had tachycardia. I think if I hadn't been persistent he would have just brushed me aside. He did arrange an ECG, Echo and a monitor. I came away pretty frustrated. Surely cardiologists must treat patients with AN and POTS? I was also annoyed to find out that neurologists who had seen me during two hospital admissions had put all the nerve damage down to ME/CFS and not AN, so nothing shows up in my files to support a proper diagnosis.

Any tips on getting something done or is it like always like this when tackling doctors?

Thanks

TCP

[icesktr189]

Demand a tilt table test. Do you pass out or have pre sycope. I went to my cardiologist and told them I was passing out multiple times a day and they did the test the next day. Good luck! I know it can be very frustrating to get a diagnosis.

[ramakentesh]

The tilt table test is the gold standard for POTs and other postural abnormalities - but neuropathy may require a QSART or other tests. I think about 52% of POTS patients also have QSART abnormalities, others have MIBG reuptake abnormalities and others have neither.

[Chaos]

You may have a bit more luck trying to see an EP cardiologist. (Electro Physiologist Cardiologist). They tend to be the ones who have a better chance of knowing about POTS etc. I saw two cardios prior to the EP and neither one picked up on my issues- in fact blew them off completely.

As far as neurologists- in my experience a lot of them know NOTHING about the autonomic system. You probably need to check with them before you bother to see them to see if they treat autonomic issues. Usually you need to go to a specialized practice that has the autonomic testing available. Most cardiologists can order the tilt table test but most of them don't have the autonomic tests that you would need for a diagnosis of AN. You can have POTS etc without having AN.

Sorry to hear you're having a hard time getting a good diagnosis. Unfortunately that's a very common experience amongst people on here. Good luck!

[janiedelite]

It may be helpful to contact a nearby doctor from DINET's physician's list:

http://www.dinet.org/physicians.htm

[jenglynn]

I struggled with this for MONTHS!!! I am fortunate enough to have a wonderful family doctor who has been seeing me for years and was literally watching me deteriorate before her eyes. She wasn't willing to write it off a anxiety. I had some syncope and shortness of breath right at the beginning of this flare so she ordered a Holter monitor which came back showing tachycardia. She referred me to a cardiologist who was completely useless. He said, "Yeah, you faint and have tachycarda. Put me on a Beta Blocker (great idea with my low blood pressure genius!) and sent me on my way. I kept getting worse so she said I needed to see him again for a TTT but she couldn't order one. He was extremely resistant to order it but did. Came back positive for POTS. He decided to send me to a neurologist who was even MORE clueless if possible. To be honest, I don't think he has even heard of autonomic dysfunction. He did the typical neuro tests and said that I had severe balance issues, very large pupils and very high arches but nothing that indicated a problem. He dismissed me as healthy.

I went back to my family doctor and we started really studying the disease. She had HEARD of it at least but knew nothing about it. She consulted with a specialist and spent a lot of her own time researching and I came in weekly and we would compare notes and do lots of trial and error with different meds. She is always available for questions via home email or I leave a message at her office. She referred me to an electro physiologist cardio doc in our system who ended up between absolutely wonderful. He actually LISTENED to me. He took one look at me and said "You are a very sick young lady." Not really what I wanted to hear, but better than "Why are you here? You're fine!" He looked at my TTT again and asked why cardio had ignored the POTS dx.. I said he didn't really ignored it but just said it wasn't a serious illness and I didn't need a doctor to handle it. I needed exercise, salt and fluid and I would be fine in a month. Yeah, right, if only. Well, luckily my EP said that was crazy and consulted with my family doctor and ended up getting me to a specialist and then to Mayo right in time as organs were shutting down.

I consider myself one of the lucky ones. At least I had TWO doctor listen to me. I think what saved me besides the positive TTT is that I have very orthostatic BP (I know, not really a POTS symptom but still) and that is hard to hide in a doctors office when they do the orthostatic tests. It was obvious something was wrong. Can't count the syncopal spells I had on the floor of an exam room. I would think someone really struggling with POTS without obvious symptoms in the exam would have a much harder time and it just is not fair. We deserve to be taken seriously without just being given an anti- anxiety drug and sent on our way.

Jen