How did you get diagnosed?

[friday]

Since i'm new here I was wondering about how some of you found out you have POTS or OH or any of the other ANS what do you call them? Syndromes?? Did you describe the symptoms to your GP and he /she suspected it? Did you get sent to a nuerologist, and they found it. Did you read an article and say that's me and then have to get the doc to give you the right tests? Did you have any probelms getting diagnosed?

Sue

[ethansmom]

Since all of our stories are so incredibly different, all I can offer is the steps I took to get diagnosed...after being mis-diagnosed by several doctors with asthma, anxiety, stomach ulcers, a seizure disorder, and Meniere's disease. I had seen an ENT, three GP's, a pulmonary specialist (for the breathing problems), several well-meaning cardiologists, and neurologists, you name it. Finally I hit the right one, who diagnosed me with POTS- but at the time I had no clue what it was. He was a pediatric cardiologist, and I assumed it was yet another wrong diagnosis, so I went to Mayo Clinic in Jacksonville, FL for more testing. They confirmed that he was indeed correct- it was after that that I really started to improve as I worked with the docs on medications and lifestyle modification.

It can be a long, long road but you are in the right place here, you can find docs in your area as well as loads of information. My personal suggestion would be to take any information you can find from the DINET and NDRF websites and take it in to your doctor to read and evaluate.

Does anyone have any really helpful links?

[futurehope]

I had run into the term "neurally mediated hypotension" somewhere. Maybe it was in an article. I can't remember. Anyway, my symptoms were strange enough to not fit into the normal criterion. Nor did any usual testing reveal anything. So, on a hunch, I figured I had something like NMH and called Johns Hopkins (where I live in Baltimore) and found a neurologist who treats NMH. (I knew they had researched NMH at Hopkins.) When making the appointment, I asked the secretary "Does he treat NMH?" even though I had no idea if I had it or not. She said ,"yes" and I made the appointment all the while wondering if it was a big mistake or a big waste of money and time. I went to the appointment still thinking I had made a mistake, and within 10 minutes of taking my history, the neurologist said, "I think I know what's wrong with you. I think you have POTS. But I will have to do some testing to confirm it." He did a TTT and some other things, and he was right. It was a MAJOR relief to know that the stuff I had been experiencing had a name.

[MightyMouse]

I was tentatively diagnosed by a neurologist, who sent me to a cardiologist--the cardio confirmed the diagnosis: POTS and NMH/NCS--via a tilt table test. Prior to that, my primary had dx'd me with CFIDS and Fibromyalgia.

Nina

Edited July 31, 2004 by MightyMouse

[MomtoGiuliana]

Although each of our stories is different, and we all don't have the same problems, one thing we do all consistently share, it seems, is that we all had trouble getting a proper diagnosis. Unfortunately, autonomic problems are hard to diagnose and often unknown of by doctors, even specialists in cardiology or neurology.

If you suspect you have POTS and/or NMH or something related, it makes sense to talk to your doctor about getting a tilt table test. Then of course, the challenge is proper analysis of the results and then, proper medication and other lifestyle modifications to get better.

I had a tilt table test that led to the diagnosis, ordered by my endocrinologist. I was diagnosed by a POTS specialist who is an electrophysiologist (a type of cardiologist). Most electrophysiologists are familiar with POTS and NMH to some degree.

Prior to diagnosis, I was misdiagnosed with anxiety and postpartum depression. The key to proper diagnosis and treatment is generally to find a specialist in autonomic dysfunction.

[morgan617]

my pcp ordered every test known to man in this area. i actually do have meneires, so it was a little confusing. but the cardiologist who did my ablation, which was the worst thing that could have happened by the way, was the first one to mention autonomic dysfunction. from there i was off and running on the net. i give all the info i get to my pcp. morgan

[friday]

Thanks all. It is sad at how sick one is yet they have to do so much work to get help. It's also sad how many doctors want to blame anxiety or depression for everything. I guess it's just easier for them. I think it has a lot to do with the amount of time insurance allows them with each patient. But they really should listen to a patient with an opened mind. So often I go in with information to ask about and they are so quick to try and disprove it. I'm waiting for my appointment with the GP now, to get a refferal to see a nuerologist. I feel nervous thinking about how I have to plead my case when I go in. Then the next step is, will the nuerologist even know enough about this stuff? Well, I'll have to take it one step at a time, and not give up on searching for answers. thanks again.

Sue

[Kristen]

Hi,

I went through the whole routine of misdiagnoses, like many others. What finally helped me get the correct diagnosis - POTS - was monitoring my blood pressure and heart rate. I wrote everything down and when I brought all of the numbers into a new doctor, he instantly said POTS and then verified it in his office. Turns out my tilt table test from three years prior showed POTS as well, but the doctors didn't realize it - they just commented that it was funny my heart rate went up so much. My new doc said most doctors still don't know about this and that he only knew because he read some articles about it recently.

Kristen

[metoo]

Hello,I had been misdiagnosed for almost 20 years!Finally I found a PCP that listened and he sent me to have every test he could,then specialist.My Neuro was completely at a loss so he called Mayo Clinic in MN,they were the first to mention Dysautonomia.I waited almost 6 months for an appt at Mayo.They did a tilt table test the very first day,every test I had after that the staff performing the test mentioned the TTT and how I did on it and went out of their way to help me so I knew I had already been dx with POTS.Most PCP do not know a lot about POTS and I personally know a few doctors who would rather write you off as depressed than admit they do not know something.It is a struggle for most to be dx because of the lack of knowledge.Melanie

[Mary]

I went to my primary doctor with a heart rate of 120 or so sitting. She did orthostatic vital signs and noted the gross difference in numbers. My respiratory rate was also up due to my heart rate. I felt so bad I had to lay down during the history taking. I shared my symptoms and she sent me to a cardiologist. From him I had a 24 hour halter monitor, a month long loop monitor, an echo and the definitive tilt table test that I miserably failed I was so exhausted after the tilt test. I was on florinef prior to and during the tilt test and still failed.

It took about 6 months for a definitive diagnosis of POTS. Good luck. Mary

[calypso]

It took me about six months to get diagnosed, although I am a former health news reporter so I did my own research early on and knew it was POTS a month after my symptoms started. A neurologist diagnosed me, and a cardiologist in the ER suggested it when I went there about 3 weeks after symptoms started ... but I had just had a baby and he also thought it might be postpartum cardiomyopathy (that's one time I was GLAD to have POTS and not cardiomyopathy!). But I never saw that cardiologist again, and when I went in for my follow-up appt., the partner cardiologist I saw didn't "believe in POTS." So he said I had sinus tachycardia.

I ended up asking my primary doc for a neurologist consult when I started to develop severe muscle weakness and poor coordination in my hands. I went through many tests and exams; he even sent me to a rheumatologist to make sure I didn't have lupus or an autoimmune disease. He suspected POTS at my first appt. but did the right thing by being very thorough and making sure he couldn't find another logical explanation for my symptoms. He only has a half-dozen POTS patients, but he is a great guy and I am a guinea pig for him. I've tried a couple meds he suggested and they haven't worked great, but they provided relief of one problem or another. For instance, a 5 mg dose of Lexapro, which is a half dose of the antidepressant, takes away my chest pain and revved up feeling. The beta blocker helps with heart rate. But nothing has fixed my shortness of breath, weakness and muscle wasting.

Wow, this was a long explanation. I wish you a speedy diagnosis and a complete recovery from this horrible illness.

Amy

[ramakentesh]

Im new here and have been diagnosed with POTS.

I had a terrible time getting diagnosed: nine months of being treated like a loonie. Originally my first doctor thought it might be my thyroid so sent me for tests - my thryoid hormone was slightly higher than normal and i had some nodules so he told me it was my thyroid and put me on inderal (beta blocker). The problem was i was so terribly dizzy, lightheaded and out-of-it unless i was lying flat in my bed that the inderal made these symptoms worse while getting rid of the palpitations, breathlessness and tremors.

Initially my symptoms were waking at night with a pounding heart beat, termors, and double vision - then my hands would tremble and my chest would ache. I got vitreous floaters all through my eyes and my nipples were swollen.

When the endo said that it was not my thyroid, but had to be 'anxiety.' i felt so angry because i knew that i was not going mad. I went to two more endos and one suggested hypotension upon standing, but because i got higher blood pressure and hreat rate upon standing i was told that it 'couldnt be that - and must be psychosomatic.'

I went to my old doctor from childhood who suggested that i was a 'speed addict - its obvious from your tremors and weight loss.'

I went to naturopaths who told me i had reactive hypoglycemia - which was sort opf true as my blood sugar was dipping low, but my adrenal response was over the moon - tremors, confusion, chills, dizziness (more than usual!)

Every time i went to the supermarket or a the plaza, the neon lights and crowds woiuld overload me and i woulkd be so dizzy, weak and spaced out that i could barely keep my eye lids open. I would go home, loy down and then be fine ten minutes later. My fingernails started to get ridges and my eyes were full of vitroeus floaters, i couldnt deal with any stress and had the odd panic attak - which was hard to accept for a rational person like myself.

Then i went to an alternative doctor who suggested chronic fatigue complicated by thyroid abnormalities, then it was gilbert's disease, then a host of other obscure diagnosis - although im sure all the doctors thought i had anxiety - every specialist i saw jumped to that conclusion and i could tell that my GPs suspected it as well.

Then i found POTS on the internet, copied the details and took it to my doctor. He instantly asked me to lean forward and whether i felt my heart punding in my head - i said yes - off to a specialist who confirmed POTS.

FInally a diagnosis after months of fear, trauma and doubt...

[justme]

My wife's neurophysiologist suspected POTS. He never said anything to us though. We found out when we read the records prior to going to Mayo. Mayo diagnosed my wife with POTS.