Who Gave You Your Dys. Dx/ How Long Did It Take?

[houswoea]

Just thinking about the doctor who finally diagnosed me and wondering if awareness was getting better these days... I know it took years for many of you, and nowadays maybe it doesn't take so long...

I went to my health service clinic on campus 5 times, urgent care three times, and the ER probably twice before I got sent to a specialist... a nuero guy. Then he sent me to a bunch of different people with different theories, and then when I went to see the cardiologist he tried to tell me it was "just neurally mediated hypotension, lots of girls get it, just drink water, blablah" and I started just crying and crying in front of him... embarrassing... and I kept saying that I couldn't even stand up anymore or make it through the day or have any sort of life and that it couldn't be just something that will go away! He was sweet, he promised he would figure it out.

Then he sent me to the electrophysiologist who gave me a TTT and the diagnosis. All in all, about 9 months since I first felt the symptoms. And that's not too bad! It took a lot longer to find a working treatment plan, but thats to be expected.

Can anyone weigh in? Maybe it's not so hopeless!

[MomtoGiuliana]

First time I had symptoms it was diagnosed as anxiety. This was at Johns Hopkins after my primary care dr did not know what was wrong. Really helpful!

When it came up big time with my pregnancy it was about 9 months before diagnosis (my daughter was about 4 months old). And when I cried I was told I had post partum depression. That's great that you had a doctor who took it more seriously when you cried. Dr's should have compassion and see that if a patient is distressed that symptoms must be real and severe! I have learned to keep emotions in check b/c showing emotion with a doctor never served me well...

I do hope people w POTS are in limbo less time now than we were a decade ago or more.

[Brye]

I was lucky. Mine kicked in about 1 week or 2 after baby #4. I was in the hospital with nausea/vomiting and was diagnosed with a kidney infection. I was admitted and a nurse noticed my HR was in the 30's. They ordered a Tele monitor and it went from 30-160's every time I stood up. I had been fainting prior but I also was pregnant and then I got sick after. It was a cardiologist who diagnosed it but sent me home without treating it after 2.5 weeks in the hospital. I kept fainting and returned and finally an EP doctor was willing to treat it after a TTT confirmed it.

I feel blessed to have been diagnosed so quickly!!

Brye

[zaks27]

I was lucky also. I'd done my homework and fit POTS to a "T". Being a RN helps when I went into my doctor's office and told him "let's not waste time--I think it might be POTS." I got a referral to a cardiologist and the TTT was done within a month. I knew it'd be positive--you can do your own testing by just laying supine for 10 minutes or so, and then standing still and taking you pulse and BP every 5 min. or so. I have pre-syncope--I've never actually fainted. I'd say start of symptoms to diagnoses was 3 months total. I know, I was REALLY lucky. Thank God I have a doctor who respects my opinion...

[MamaTrain]

Took me 2 years to get the "official" diagnosis but through all the wonderfully helpful people on DINET I had known it was dysautonomia for over a year before dx! I am trying to spread awareness here in my little town by talking to doctors and naturopaths when I get the chance. I hope it might help someone else with this not have to wait as long!

[houswoea]

First time I had symptoms it was diagnosed as anxiety. This was at Johns Hopkins after my primary care dr did not know what was wrong. Really helpful!

When it came up big time with my pregnancy it was about 9 months before diagnosis (my daughter was about 4 months old). And when I cried I was told I had post partum depression. That's great that you had a doctor who took it more seriously when you cried. Dr's should have compassion and see that if a patient is distressed that symptoms must be real and severe! I have learned to keep emotions in check b/c showing emotion with a doctor never served me well...

I know what you mean! I can't even count the number of times doctors have told me it was psychological. It got to the point where I even believed them! God blessed me that time with the considerate doctor. Now I've learned that if they start to assume there is a psychological component, I thank them for their time and find someone new.

[toddm1960]

Took me 4 years and 30 doctors, and I was the one that found DINET and had to talk my neuro into finding someone to give me a TTT. Even though I've had symptoms of this my whole life, only since 2005 have the symptoms been this extreme.

[Sarah4444]

Twenty five or so years, and I think I am up to 46 doctors. Part of my problem is that symptoms developed over time, would come and go, and I learned to ignore and accomodate for them until I literally couldn't anymore. The whole situation was also confused and obscured by chronic pain. When I had tried to explain my symptoms to doctors in the past I got nowhere, so I kind of gave up.

I finally started to figure it out for myself, thanks to this site, and went on to get officially diagnosed. Still a work in progress, though.

[songcanary]

I was not lucky. It was three years of constant nausea and lightheadedness. I am the same as Sarah4, I have had intermittent symptoms my whole life as well, and learned to live with them until I just could not function anymore. My doctor kept sending me to gastro because of the nausea. Many unnecessary tests. I finally referred myself to Cleveland Clinic and saw a very kind endocrinologist who referred me to rheumatology, and I got diagnosed on the spot. TTT and other tests followed to confirm. I am doing pretty well right now but I still live in fear of relapsing.

[bkweavers]

So sorry to hear how long some of you waited for a diagnosis. Let me guess - you had many doctors who told you it was in your head and sent you to counseling?

Anyway, we feel very grateful to Children's Hospital of Milwaukee for diagnosing Liz in a month. A wonderful nurse practitioner did her research and had us then do a tilt table test and a sweat test. Incidentally, she was also the one who helped us get those tests done asap. (A cardiologist at Children's was going to make us wait a whole month for the test and his attitude was too bad!) I will always be grateful to her and the neurologist there for not dismissing us.

If it wasn't for this website and others like it, I wouldn't have known as much about POTS. I learned so much from talking to others on here than I would have ever learned from doctors. Talking to others on here was like a light shining during a very dark time. I was scared and frustrated at the beginning of this and it was wonderful to be able to ask questions of others and just feel some support.

I hope and pray that websites like this one and the word getting out will soon put a stop to people having to wait so long for a diagnosis.

Brenda

[Bostton1]

Im new here but it took me over 22 years to get diagnosed. It started my sophomore year in high school 1988. To be totally honest I was craning my head out my bedroom window trying to smoke pot (how ironic) it was real hard to do and all of a sudden I got tachycardia, I had to wake my parents and go to the ER with a heart rate of 220 lol. I had only did drugs once before and the doctors said I must be allergic, I never did them again. Whenever I would have a flare, I would always blame the pot on my problem, back then I though maybe it had changed my bodies chemicals or something. It took me years to piece together the whole neck tweaking thing.

Then after that whenever I would tweak my neck (car accidents/turning wrong/opening my mouth too far etc.) It would be extremely noticeable for a few months or so and then I wouldn't feel it anymore, everyone including doctors would tell me it was anxiety. The only time I had problems with a racing heart etc was trying to run, after about a 1/2 mile my heart would just be going crazy. In 2000 it started again after leaning my head backwards and cracking my neck. I was diagnosed that time with PTSD from being in the military(even though I had only worked in an office, the doctors didn't believe me though.) This lasted until 2003 and I found out about POTS from google and stopped worrying about it.

In November of last year I was passing a kidney stone and got worried I was having an intestinal blockage and pushed real hard about 50 times going to the bathroom, two nights later my POTS made a huge reappearance. This is the worst its ever been, but every time its been noticeable seems like the end of the world. I finally went to the ER a few weeks later, then a cardioligist who had to call 3 other cardios to diagnose me.

Its always been there, but not in a front and center fashion as during the flares I've had.

[janiedelite]

My first tachy episode was in 10/06, after which I started with holter moniters, ECG's, and several very puzzled looks from my PCP. I was still able to work in the PACU (recovery room) and would sometimes put myself on the heart monitor, run a strip of my tachycardia, and ask the various anesthesiologists and other specialists what they thought was happening. Still no answers, and many alarming looks!

I became gradually sicker and my PCP started referring me to specialists again in 2008 (I probably saw over a dozen docs). Being a nurse did help, and I was taken seriously but my symptoms were too overwhelming for most of them. Finally a neurologist told me he didn't know of anyone in the area who could diagnose or treat dysautonomia, but he'd referred patients to Mayo in the past and wanted to send me there.

I went to Mayo in 1/09, so it took me 27 months to get diagnosed. Mayo did a great job of testing for underlying conditions and naming my illness, but I've been responsible for finding doctors who are willing to come up with a treatment plan.