How Long Did It Take To Get A Diagnosis?

[HopeSprings]

Just curious. I was ill for 10 years with all kinds of symptoms and couldn't get a diagnosis. At around the 10 year mark, a bunch of new symptoms came, especially the noticable tachycardia. 1 year later I was diagnosed with POTS - so 11 years total. How long were you sick before you got the dysautonomia diagnosis? Hoping with more awareness, people won't have to wait as long as I did.

[lgtaylor100]

I got a diagnosis within about 8 months of being symptomatic. I was diagnosed by my cardiologist with dysautonomia because I had tachycardia. A month later it was diagnosed with a TTT as POTS. I was hospitalized about three months after that basically because I was freaked out by all of the crazy symptoms and was told at the hospital that all of my symptoms are attributable to dysautonomia.

Nevertheless, I don't feel that I have a real diagnosis until the cause is found although I realize that might never happen.

My current thinking is that I would just like some relief from my symptoms and to feel more comfortable.

Lynne

[Brye]

It was quick for me when my symptoms became severe. I would say about 1 week. I was in the hospital with a heart monitor and it was pretty obvious. Treatment has taken a whole lot longer!!!

Brye

[Yolaclover]

It took about months. I still don't know why I have it.

[songcanary]

Three long hard years after nausea and dramatic weight loss. After talking with my rheumatologist, it was obvious that I had dysautonomia my whole life, but symptoms were intermittent and I just had to deal with them. Things took a turn for the worse during perimenopause.

[toddm1960]

I started in my late teens so that would make right around 30 years, and then within 9 months I was diagnosed with both dysautonomia and mitochondrial disease.

[mwise]

It took 8 mths of being symptomatic in 2010 to be diagnosed by a TTT and QSART but I really believe it started after November 2005 when I had my gall bladder out. I never was right after that and had symptoms on & off until 2010 when I got the flu real bad and spiraled down hill after that to passing out in November and being hospitalized. It has been challenging to say the least since. I just take it one day at a time.

[firewatcher]

10 months after 37 years.

[Frugalmama]

I have had health issues for as long as I can remember, and had such severe IBS in high school/university that I could barely eat anything ( I'm 5'9" and couldn't get above 120 pounds) and had to finish my degree by distance ed. We then figured the crushing fatigue and extreme exercise intolerance was chronic fatigue syndrome. I started noticing acute POTS symptoms in April 2008, and finally got a diagnosis of OI around a year later, and I was finally diagnosed with POTS in January 2011. Now that I look back, though, I've been having the HR spikes (in addition to the other symptoms) for more than 10 years - I just pushed through and finally noticed when I did because my first child was walking and I couldn't take care of her when she took off. So...it took almost three years from when I actually noticed, and from that point my symptoms have become much worse.

[Katybug]

4yrs total and counting...4 yrs ago my symptoms started. It took 6 months and 18 doctors (and one trip to my verterinarian whose the one that figured it out) at that point to diagnose tick-borne illness. I had all the POTS symptoms then, too, and we are now seeing research papers linking tick-borne illness to POTS. I have never been symtpom free since then. Finally, a severe flare up in Fall 2010 sent me back to pursuing either additional diagnosis or additional treatment for the original dx. It took 7 months from then (4 repeat docs and 5 brand new docs) to get the POTS dx in Mar 2011. Now we are are starting to look at root cause including possible mast cell issues, so there maybe more dx to come.

[abnel]

It took 1 year from the initial onset of POTS symptoms (or 16 months if you include the first 4 months of feeling generally tired all the time and being told I just had post-viral fatigue). I really feel for people who've had to wait a lot longer than this.

[Ernie]

30 years

[HopeSprings]

Ernie - 30 years of actively pursuing diagnosis with Doctors? That's what I was getting at - how long it took Dr's to figure it out. Actually I'm surprised many people were diagnosed pretty quickly- that's good!

[sandymbme]

I first had syncope episodes when I was seventeen, which is 19 years ago. But my symptoms were largely mild, until I hit 30. I was diagnosed with POTS at 31, so about a year after severe symptoms popped up. I got my EDS diagnosis in April, so four years later. So from onset of severe symptoms to diagnosis of probable cause, about 4 and a half years.

Sandy

[IDreamInColor]

29 years~ I have spent my whole life bouncing from one doctor to the next trying to find the reason why I had low blood pressure, nausea, extreme fatigue, heart palpitations, tremors, and the list goes on and on. After all these years I finally found a doctor who finally found it.

[potsgirl]

I was diagnosed with heart problems including bradycardia at Mayo Clinic after about three years of feeling sick. The POTS diagnosis came about 2 years later, and the small fiber neuropathy about 6 months ago.

[chipper]

1986 was the year that I started looking for a doctor to help me. 2002 was the year i found the best doctor on earth. I was better 4 years later. 2011 still sick but grateful to have a diagnosis. The knowlege that doctors have now is a blessing for all of us.