How Were You All Eventually Diagnosed?

[smish]

Hey everyone
Just curious as to how you were diagnosed - did you have to pretty much diagnose yourself or was it a doctor who spotted what was wrong?

[Chaos]

Diagnosed myself with help from a lot of people on here. Got the information and encouragement I needed to find the right docs and eventually got the right diagnosis from them.

Are you in the same process?

[E Soskis]

I was close to death - my heart had slowed to 20 beats/min - I was passing out all the time - my cardiologist put me on the right track and I happened to see a neurologist who is the only one in the United States to have made 100% on his boards - he aced them - he has a photographic mind and somewhere in the recesses of his brain, he remembered an obscure article about AAG - he dug around in his office and came out with the article - all wrinkled and worn but, worth the read! I had the antibody testing and he called me in the middle of the night very excited that I had the highest antibody levels ever recorded - so, guess you would say it was "providence" - I don't believe in "luck" - all luck means to me is the proof God intervenes in our daily lives!

[Krissy21]

My doctor at the Cleveland Clinic spotted what was wrong. I was already seeing him several times a year for SVT and palpitations. As I started to show more signs of dysautonomia, he decided to run all of the tests for it as well as some blood work to rule out other stuff like anemia, thyroid problems, etc. I had a tilt table, autonomic reflex test, blood volume and hemodynamics, and a QSART. Previously I had countless EKGs, an echo, stress echo, 24 and 48 hour holter monitors, 30 day event monitors. I also had an EP study and an ablation for the SVT. After all the testing I was officially diagnosed with POTS, neurocardiogenic syncope, and inappropriate sinus tachycardia. They don't know for sure what caused mine, possibly a viral infection, and we are hoping I "outgrow" it by my late 20s.

[LastUnicornLady]

I was having a lot of issues at the time, and was referred to a GI doc for stomach pain and other such problems. I mentioned off-hand the fact that I had been having issues with passing out, and she suggested I look up POTS, and maybe get in with a cardiologist. It took two tries to find a cardiologist who would listen, but I finally got a diagnosis because of that gastroenterologist.

[smish]

Diagnosed myself with help from a lot of people on here. Got the information and encouragement I needed to find the right docs and eventually got the right diagnosis from them.

Are you in the same process?

Hi Chaos,

Yes - I have my second Cardiology appointment in a couple of weeks. I'm in the UK.

I went back to my GP numerous times and had lots of blood tests and a 24 hour ECG and eventually got referred to Cardiology. At my last appointment they did another ECG and then we just talked about how it all started and they sent me away to have some 24 hour urine tests to rule out Carcinoid Syndrome and Pheochromocytoma. It really didn't seem like they had much of an idea what was up with me though, and POTS was never mentioned even though I said it feels like it's much worse when I'm standing, as well as the fact all my symptoms match POTS, so I'm guessing they haven't heard of it.

Just going to have to mention it at the next appointment or I might never get anywhere. I feel like a hypochondriac telling doctors what I think is wrong with me though, haha!

[Always hoping]

Mine was a little of both. My GI doctor told me for years that I just had a "nervous stomach" and thought I was a bit crazy with all my other symptoms. My GP and I made a plan about 10 months ago and I started logging everything I ate or drank to find some type of correlation to my symptoms. After several months, there were still none. She then began to run some of the common tests for other things and I hit the Internet. I started looking for my symptoms that i thought weren't stomach related. After many things I knew it wasn't, POTS popped up. Reading it was like reading my life! I took my pulse while I was laying there reading and then stood up and took it. 40 point increase right away. I had never thought that my heart rate was "off" before that. Next time I went to see my GP I told her - "I'm a doctors worse nightmare, a patient with printouts from the Internet". Thankfully she is an advocate for me and said "let's hear it". She had never heard of it and still is not that familiar with it, but she has been in my corner helping me get to the right doctors. Heading to University of Pennsylvania is two weeks to get a second opinion that it is POTS.

You will always be the most knowledgeable person in the room about what is going on in your body! Don't back down. Good luck!

[BeforeTheMorning]

I had never heard of POTS and the first several doctors that I saw didn't know enough about it either. When I did find out about POTS it was amazing because it was the only thing I'd heard of that could tie all my symptoms together. I went to my GP and told him I thought it could be POTS and he had never heard of it, but fortunately for me he was open to the idea and he read up on it and referred me to my specialist of choice and after MANY tests I finally got my diagnosis last year.

[Christy_D]

My son's doctors, GI and pediatrician, were telling me nothing was wrong. A diagnositician said it was depression. They said it was anxiety or school avoidance , etc... So, knowing they were wrong, I took him to a psychologist anyways. After the third visit, the psychologist told us this was not a mental issue, but a real physical issue. She said she researched the symptoms he was telling her and thought it was some type of orthostatic intolerance and that we should see a cardiologist. She said she had to frequently research her patients symptoms, because many people are written off with mental issues when their doctor can't figure out what is wrong with them.

[Natops]

My cardiologist recognized it.... Dr. Chemali (Norfolk Va) diagnosed me.

[dkd]

I had always been healthy-didn't really have a doctor except for when I had my two kids. Oct 2012, I had a tingling/syncope episode and went to a internal medicine doc the next week. She ordered a treadmill stress test and I wore a Holter monitor for 48 hours. They told me my stress test was inconclusive because my heart rate was at 135 when they started so it didn't take very long for me to get to my target HR. They said the Holter was normal. She sent me to a cardiologist who did a nuclear stress test that was normal. He just told me to exercise more. Right after that, I had another episode in the shower with tingling on my face and dizziness, so I thought I might be having a TIA, so I called a neurologist. He did a brain MRI which was normal. He did some other blood work for Lymes disease, myasthenia gravis, clotting factors, other things I can't remember. He really did try to help me, but everything came up normal. He sent me to an endocrinologist, gastroenterologist, ear nose throat doc. Everything came back 'normal'. I had another pre-syncope episode and decided to go back to cardiology. The previous doc had left the practice so they gave me an appointment with the Electrophysiologist. He looked back at my records, especially the Holter monitor that I had been told was normal, and he said "I think you have dysautonomia". He ordered a tilt table test that confirmed it. I've been put on a beta blocker and midodrine. My heart rate is down, but I still have other symptoms that bother me (pressure across chest and up into face, fatigue, shortness of breath, ringing in ears, tingling on lips)

[nomdeguerre0850]

I diagnosed myself after a lot of internet searching and reading a lot on this website. I brought the article "The Postural Tachycardia Syndrome: A Concise Guide to Diagnosis and Management," ( http://www.dynainc.org/docs/potsconciseguide.pdf) to my appointment as well as a chart I had created with my bp and pulse readings supine, sitting, and standing at 1", 3", 5". Even though this was in the earlier days of my illness, the data was pretty dramatic and POTS fit most of my symptoms.

Docs like to have objective, observable data which can make the diagnosis of dysautonomia difficult and frustrating. Prior to my charting my own bp and pulse, I don't think I'd ever had my bp measured standing up. Since most of the symptoms are not observable, especially in the earlier stages, docs can easily miss it if they aren't familiar with it. There is a lot more awareness today than there was ten years ago and a lot of research is being done. Hooray.

I would suggest tracking and recording your symptoms, especially the measurable ones like bp and pulse, and bring it with a copy of this article. I used to take this one with me to every new physician I saw to help them understand what was probably going on. In Hawaii, I couldn't find a doc at that time who had even heard of POTS. These two items really helped them to become partners with me to help me start to manage my symptoms.

I was also referred and went to Mayo Clinic in Rochester for autonomic testing. The referral came as a direct result of sharing this info.

Good luck. Diagnosis is a big part of the battle and very validating.

[Libby]

A college friend of mine and I diagnosed me. She has POTS too, but she's been severely symptomatic since her early teens, though it's gotten slightly better over the last decade. I, on the other hand, have been gradually gaining momentum since my teens. Our symptoms differ enough - and mine weren't all that bad in college - that we both recognized that there was something off with me, that I understood what she was going through a little more than I probably should, but it never clicked with either of us that I might have the same issue.

At least not until I was visiting her and a few of our other friends, the year after college. She had always said that her POTS made her legs feel heavy, because of the blood pooling. Achy and full. And my legs had recently started pooling pretty badly, though I didn't recognize it for what it was. I just knew they ached in a weird way. So we were at dinner, and I randomly mentioned that I understood what she was meant by heavy legs, thinking that it was just one of those weird ways where I understood her. But the blood pooling stood out to her as something no non-POTS person would get.

So we spent the night comparing symptoms and found a lot of overlap. In my defense, I had been raised with more of a 'suck-it-up' mentality, so I hadn't recognized some of my symptoms as being abnormal. When I got home a few days later, I did a little research and luckily found a POTS doc 10 minutes from my house. I called her and explained what I thought over the phone, she agreed, and after my appt later that week I had my diagnosis.

[lynnie22]

I had many symptoms on and off over many years. However, no one knew what was wrong with me. I had never heard of pots. Nor had any of my doctors. After a few years of racing heart beat when walking and having trouble breathing sending me over and over again to my pulmonologist and cardiologist, my pulmonologist suggested I go to Mayo, suspecting there may be something neurological going on. That's where I got diagnosed four years ago.

[POTLUCK]

I was on propranolol ER 80 mg BID 5 years ago when I started getting light headed like a smothered or choking feeling. Went to hospital twice. They took me off propranolol for a exercise stress test, and I got much worse with crazy adrenaline feel, and went to ER second time. Cardio called to ER for my HR diagnosed me. Sent me to Los Angeles specialist group of cardio's who put me back on Propranol high dose and did tilt test. Said I did not have POTS. I started reading and realized tilt test is no good on high dose Propranolol. I went to primary and asked for cardio that does POTS that I looked up. He sent me but also diagnosed me with anxiety. He did not understand what POTS was. Anyways this Cardio did tilt test off Propranolol (slowly tapered between visits) and I was very positive for POTS with lying HR something like 95 and standing about 155. Then I did slow taper of propranolol with exercise and got down to 3.75mg BID over 2 years but never could get off it completely.

[Bigskyfam]

Ive been not the most athletic, but type a all the way. Not bouncing back after surgery, dental procedures. Became anemic. Then one October day last year, I crashed hard. Headache, chest pain, nausea, tachy. Tons of tests MRI, EKG echo, holter. Holter picked up tachy at times. Got a TTT and a dx. Etiology unknown. Still exploring. Med free, lifestyle changes was on the curve up, sliding down a bit lately. Was an Electrophysiologist who heard about me to do the TTT. Made it to a specialist...

[lejones1]

It took me 7 months after my symptoms got really bad. They were so numerous and vague - I was told I had "post viral syndrome", that I needed to exercise more, that I was depressed, etc. My gynecologist was the first doctor doctor that was like hmm this doesn't sound right, so referred me to a rheumatologist, thinking it might be autoimmune. He asked me a bunch of questions, including whether I ever blacked out/passed out and felt worse standing. So he referred me for a tilt table test with a cardiologist. I'd just heard of POTS a couple of weeks before from a family friend, and I knew nothing about it.

I think I've had mild symptoms since I was a child and that may have set me back in getting a diagnosis, because they were things I didn't think to tell a doctor. I always thought it was normal to black out when I stood up. I thought always having to sit with my legs up and not being able to stand still were just my little quirks. Oops, guess not!

Don't worry about sounding like a hypochondriac! I used to worry about that too and I finally just realized that I know my body more than anyone else, and unfortunately sometimes I know more about my diagnoses then doctors too. So if you know something is wrong, just educate yourself and don't back down!

[little_blue_jay]

Figured it out myself. (Thanks, Dr. Google!)

Went through the gamut of things I thought I had! Everything from Whipple's disease to mastocytosis!

Count me as another who printed out POTS stuff and brought them with me to the doctor's! Hey if I don't advocate for my own health, who will? Anyway he believes me when I tell him what symptoms I have and he has warned me that there is only one doctor in all of Ontario who does the Tilt Table Test and that the wait to get in is "one to two years"! No joke! He gave me the number for that doctor's office and I haven't been able to get through (he's away till Sept. 25th) but my doctor says there's a slim chance if there's a cancellation I might be able to get seen earlier than what he said.

[TCP]

I diagnosed myself with ME in 1991 after having it since 1984. A neurology professor confirmed it in 1992
In 2007 I diagnosed peripheral neuropathy and autonomic neuropathy. It was blamed on the ME and anxiety
I diagnosed myself with Ehler's Danlos this year and it may be confirmed tomorrow (Now confirmed Type 3 EDS)

I am going to see a cardiologist next month who has interests in POTS.
If neither of these consultants are up to the job I will go to London to see doctors who can.

[smish]

Thanks for your replies everyone! I've just got home from my second cardiology appointment.

Both 24 hour urine tests were fine so that's good. He was a bit stumped and said "you're a bit of a mystery" so I took out the POTS information I had printed. He seemed to have heard of it but didn't know very much about it and seemed to suggest that the only way to treat it was with beta blockers (I'm already on Propranolol). He has suggested trying Bisoprolol. Anyone had any experience with that?

[Angelika_23]

It took 7 years for me to get a diagnosis. No one knew what was wrong. In 2007, I was admitted to the hospital and out of sheer luck, my doctor had just been to a seminar by Dr. Grubb. Because of that seminar the day before, she gave my mysterious illness a name. I wasn't crazy and I didn't have anxiety. I was so relieved. I had validation. Even my husband had started doubting that I was really sick. Unfortunately, she put me on Cardizem upon discharge, which made me infinitely worse. That was a bad couple of days.

[Angelika_23]

I take 12.5 Metoprolol twice a day. It is very helpful.

[emartins]

I started having occasional (once or twice a year) episodes of presyncope about 8 years. I had some heart tests, but my doctor said I was fine just tachycardic. Until recently I just "sucked it up" and dealt with symptoms on my own as they were infrequent.

Last year I started a day treatment program for an eating disorder. I started getting really dizzy after meals and sometimes wasn't able to lift my head or speak, so I ended up in the ER a few times. One day I was so nauseous I couldn't get out of bed and I would throw everything up even water. The ER doc (cleveland clinic) said all my labs were normal and suggested I had POTS. I had never heard of it and thought he was crazy. My doctor and I just brushed it off because of the ED.

Now that I'm doing better ED wise and those symptoms aren't not better, worse even and more frequent, my doctor brought up POTS again and suggested I see a cardiologist at the Clinic. I've had my first visit and she agreed and ordered several tests. I still don't have a diagnosis, but my TTT is next month, so I'm hoping that will give me answers.