Share The Story Of How You Got Dxed...

[juliegee]

Hey All-

I'm researching a possible article for the DINET newsletter and I'd love your input. I'm exploring this topic because I repeatedly see doctors on TV warning patients against DXing themselves, researching their symptoms on the internet, etc. They advise patients to share symptoms with their physicians and passively wait for that doctor to magically come up with a DX and treatment plan. Did it really happen that way for anyone here???

I regularly see most of you becoming educated medical consumers (YES-learning via the internet!), bouncing ideas off of one another, comparing symptoms, finding trends, etc, and then advocating for yourself in seeking a DX- often going from one physician to another....until you find one who "gets" it or who is open enough to learn with you. And, then I see many here educating their physicians!

Are we doing it wrong? Or is their another path for patients that needs to be brought to light?

Share the story of how you obtained your DX (if you have one .) I want to hear your stories!

Thanks in advance-

Julie

[iheartcats]

I was having all types of abnormal symptoms in 2007. I'd had an ablation for an extra electrical pathway in 2005, but that is relatively common and it was obviously not POTS (a few incidents my heart got 'stuck' in the 240+ mode for no reason and that was the primary issue).

I had a bad, horrible, yucky flu in February 2007. Worst I ever had. Then I got weird symptoms: noticed I had a high HR in the AM after walking from the parking lot to work and a bit dizzy standing up. I was laid off later that year (stress!) and noticed while out running errands in the summer I would get bad tachy. I had a nice PCP and she noted it was 140 and sent me to the first EP who couldn't find anything.

I also had to pee a lot...I've always had to pee a lot (darn bladder) but this was different. Sudden, urgent, frequent and thirsty. I saw a urologist who could find nothing. He was very nice, but also baffled.

I called my old Cardio and he suggested an implant as I told him I got high HRs in the SHOWER and couldn't leave a holter on. I didn't want to get an implant at that time, though. Surgery. Ugh.

So tachy, dizziness, extreme shower tachy, thirst, dizziness, fatigue and a lot of peeing later I went back to my EP who did my ablation 'just in case.' He said you have POTS. I'm like what is THAT (and of course I have something with a dorky name, right)? I Googled' a bit and had seen something about having constant tachychardia, but mine wasn't constant. I'd say I went in clueless and he told me it was rare and to check out the Internet (it had helped others), do research on it, etc. Nice, smart EP.

My PCP was relieved I had something that tied ALL my symptoms together.

I've had other doctors ask if I was diagnosed or if I'd talked about POTS first. I'm like...ummm no. I'd never heard of this rare disease. I was diagnosed without ever hearing POTS. Doctors can ask odd questions.

But now I know what I have, of course I'm going to read research papers, talk to others, want to see what helps, etc. I wish doctors WOULD understand that. Cancer patients get support. Alcoholics get support. Dieters get support. And there are many, many others. I'm not trying to completely treat myself, but I feel I have the right to be involved since I know what I'm dealing with now.

Thanks for asking! Curious to see everyone's response!

[Janey]

This is a great thread and I've been desperate to tell this story!

Very briefly:

I'd always been a tired, lightheaded, flexible, frequently nauseous person but as it was my reality since birth, I assumed that's just what being a human was like. The first sign that I had anything autonomic-related was when I was running on a treadmill with a personal trainer at age 19 and my heartbeat was 200bpm. He accused me of being a smoker, said my arteries were probably clogged and sent me to the hospital. They said I had "an early catecholamine response to movement," then discharged me. The big change came when I went to India at age 23 with my partner. I adopted a dying puppy and caught an infection from it which seemed to attack my nervous and digestive system. From the moment I caught it, the lightheadedness, dizziness, nausea, stomach pain, tachycardia and headaches became really, really severe to the point that I could hardly move.

I returned home and went straight to the Doctor. It was assumed I had a parasite and I had all the stool tests, but they were all negative. I was referred to a gastroenterologist for an endoscopy and a colonoscopy. Negative. They said "there's nothing wrong with you." I went back about 20 times over the next year and a half to the point that the Doctors started to ignore me. Some, when they knew I was coming would stay silent until I left the room. At this point I was starting to get solid sediment in my urine (about an inch deep,) I took it into the Doctor as the only physical evidence that I was ill, but he poured it down the sink and told me to leave. They were rude, disillusioning and horrible. One of my last appointments there was to go and say "I don't know if I'm mad, but I'm so very depressed and I need you to just help me. Maybe I'm not ill, but I feel terrible, physically and psychologically - please help me." The Doctor suggested I go on a website which would help me change my negative thoughts to positive ones. Nothing else!

After two years I was at my wit's end and saved up money to see a Urologist privately at great expense. During the consultation, the Urologist took my blood pressure (no Doctor had ever done this before!) and told me it was very, very low. He confirmed to me that something was obviously wrong, but it was beyond his skills to diagnose it. I left with a lighter heart.

I went home and typed low blood pressure and digestive symptoms into google. POTS Place came up. I read through all the symptoms and had nearly every one of them. I knew instinctively that this was what I had. I looked up the Doctors on POTS place and saw that Professor Christopher Mathias was the POTS expert in the UK. I found his email address online and wrote him an email asking him to see me. Bizarrely, he replied straight away and said he could help. He said that as my GP didn't believe that there was anything wrong with me, there was no way I could get referred to him on the National Health Service. He asked me if I could pay to see him privately and then promised that he would try to get me tested and treated on the NHS. I paid ?350 ($583) to see him and he diagnosed me with POTS. He referred me onto Ehlers Danlos expert Professor Rodney Grahame who diagnosed me with Ehlers Danlos. And in November I'm going to see Professor Qasim Aziz for my bowels. All on the national health service.

My home Doctors went into shock that I wasn't a hypochondriac. I asked to see my medical notes under the Freedom of Information Act and written all over them were things like "hypochondriac," "eating disorder," "she thinks she's got autonomic problems. She probably doesn't know what the word means." It was horrendous!

[Mrs. Burschman]

Had all these weird symptoms/chronic conditions. Thought there had to be an explanation. Found this website. Talked my doctor into getting me an appointment with an autonomic specialist. Confirmed my suspicions: I have POTS.

I've noticed on "Mystery Diagnosis" that more often than not, the PATIENT is the one who figures it all out. So if they don't want us to self-diagnose using the Internet, maybe they should do a better job of diagnosing us in the first place!!!

[Rafiki]

I don't know what we did before the internet! I became sick in June of this year, first with a viral infection but I just never recovered. Doctor ran tests but said it would just take awhile to get over the viral infection and I needed to just rest. I googled my main symptoms, fatigue, low blood pressure, and rapid heart rate and POTS came up. That led me to the DINET web site. I just knew that was what I had. I mentioned POTS/dysautonomia several times to several of the doctors I have seen over the past few months and finally last week I was diagnosed with NMS and POTS.

The doctor has suggested many possible other conditions and by doing internet research on those I have been able to better discuss them and ask questions. For example my PCP diagnosed me with Chronic Fatigue Syndrome, but after I did research I did not believe I had that. Although I have some of the symptoms I don't have at least 4 of the six symptoms that are necessary. If I did not do the research myself, I would have accepted the PCP's dx and not kept searching for answers. I am all for Internet research!

Debbie

[firewatcher]

I'm sort of a self-dxer: my endo was convinced that it was mitral valve prolapse, so I went to the cardiologist and had the stress echo. Mitral Valve was just fine, so then I looked into how you can have Mitral Valve Prolapse syndrome without the valve prolapse and found this site. I cross-referenced everything (still do) and finally got the "official dx" from Vanderbilt. Honestly, if I had not pushed, I'd be on some serious psychiatric medication and still be incorrectly dxed with asthma and who knows what else. With the "rarer" diseases, I think it is often the patient who digs deep enough or cares enough to look...treating Zebras doesn't pay well, there is too much time involved.

[delphicdragon]

Let's see...

Have been flexible, nauseous, having blackouts upon standing, tachycardic, exhausted etc my whole life. Figured that was normal - wondered how everyone else did it feeling like crud. Saw multiple specialists and got diagnosed with Inappropriate Sinus Tachycardia, Migraines, IBS, Anxiety Disorder etc. Gave up on doctors.

Started having autonomic seizures in college. Was taken to the ER with zero blood pressure, held for a while and released into a neurologist's care. Neuro had no idea what was wrong but did a poor man's tilt and told me I didn't have epilepsy, so he couldn't help me, and that my blackouts were related to standing. Ignored things for a while. Was diagnosed with Ehlers Danlos by a geneticist after a very evil rheumatologist dislocated both knees, both ankles, a shoulder, both wrists and various knuckles "proving" I wasn't hypermobile. (I must admit that I did self-diagnose the EDS- but I never told my geneticist that I suspected anything.)

Went to see my PCP for a physical and complained about the blackouts. He sent me for a pituitary MRI on a whim. Found an enlarged gland and got sent to an endocrinologist. He found no tumor, but low aldosterone. Supplemented me for that with (drum roll) Florinef.

I did a google search for hypoaldosteronism and got nowhere. In the meantime, I started having chest pain and went to a cardiologist. I explained my symptoms and he did a real Tilt Table Test. It was positive. Told me I had POTS, it was due to being deconditioned and I needed beta blockers and exercise. Can't do betas - was "removed from the cardiologists care".

That's my story. Got a diagnosis, but no treatment. Am currently being treated by an endocrinologist who specializes in low blood pressure. About to see an electrophysiologist for my heart-related issues.

Sara

[Angelika_23]

I got viral meningitis in 2001. About 6 mos after the meningitis, I started having "episodes" of nervousness (which I now recognize to be an extremely high heart rate). My PCP tried putting me on several anti-depressants, saying I had an anxiety problem. None of the medications worked, and sometimes I would feel better and sometimes I would get worse. In 2007 (Yes, 6 years of "episodes" that were diagnosed as "anxiety") my PCP did do a holter monitor when I insisted something wasn't right, and the monitor company kept calling him because my HR would go so high. He didn't seem to be too concerned, and sent me to a cardiologist who said I has IST and prescribed me atenolol which didn't work for me. About a week later I went to the hospital because my HR was so high and it wouldn't come down. I was admitted for several days, and the admitting doctor said, "I think you might have POTS". She had just been to a seminar about POTS, that is the only reason she even knew how to diagnose me. Of course, I didn't know what that was, and when I got home and googled it, I googled POTTS, which is an entirely different thing! It's been a battle to keep up with all this, I am still having problems and still looking for some answers. I did get a positive TTT in 2008.

Angela

[Maxine]

My symptoms actually started out as heart symptoms (tachycardia), and attacks with wild surges of adrenaline. Symptoms were milder in the 80s and 90s, but in the 90s had to be put on a beta blocker. I didn't notice any other symptoms other then two bouts of chronic fatigue symptoms that lasted about 3 months-------if that.

In Dec of 2000 following a tooth extracxtion I had an ANS meltdown, only I didn't know what it was yet, but now have learned this is what it was. HOW did I learn this? Well----it was the internet, and reading research, and a support website! Yes folks, that's right------mostly everything I learned was via internet. I was in ANS meltdown for about 6 months, and finally one open minded WOMAN doctor though I should have a tilt table test. The next thing I knew I was sent to Dr. Grubb one week later. He diagnosed POTS.

After this it was discovered that I had spine instability, but at first it was badly herniated disks. A good neurosurgeon in Chicago repaired that in 2002, but 6 months later the area above and below that became unstable, and eventually I began feeling slipping where my neck and head come together, and in 2004 was diagnosed with cervical/cranial instability. As time passed more of my spine became unstable, and I started dislocating my right scapula/shoulder blade.

I started investaging EDS, as I had heard about it from the internet-----yes folks it was here I learned about this. I asked my ANS doc about it, and he didn't think I had it. I still felt I did, and ended up having it confirmed by three different geneticists, and was included in the NIH EDS research study.

not only do I have Classical EDS with hypermobility, but the EDS also affects my vascular system-----------and the combination of this and my upper spine compression from the instability is most likely the cause of my ANS dysfunction.

Most of my answers were from advocating for myself.

Stand up to doctors, they're just people-------------even if some of them DO act like GOD, they're not. Once I started advocating for myself it got easier.

However, there's still days when you get a doc who is so full of his own EGO that he's sick with it, and no one will ever change them. If a doctor is also a professor they may have tenure that makes things more difficult for patients who want to report an incident of unethical bahaviour. However, these days you don't see many teaching physicians with tenure.

I love an open minded doctor, even if they don't agree with me----------as long as they do it respectfully. I don't know why it's so difficult for them to show respect. Obviously, doctors who don't show respect to thier patients are suffering from large EGOS, the reason I say "suffering", is because it can't be real good for them to continually put down and dismiss thier patients when some of them might be right. This could eventually be hazardous to thier jobs, AND THEIR health. Why can't docs be like Hawkeye on MASH? LOL............. I bet he wouldn't dismiss us. Dr. House anyone?

Maxine :0)

[dsdmom]

I had life-threatening complications following the birth of my daughter in 2006. Following several surgeries, and ultimately a hysterectomy, I started having the tachycardia, low bp, etc. Over the next 10 months I developed all of the other wonderful symptoms (fatigue, gi, etc) and went from dr to dr - pcp and several specialists, including cardiologist and neurologists. PCP thought I had anxiety and needed to 'work through it.' I researched everything I could online and was brought to dinet.org. I found a dr listed on the site and that's how I FINALLY got help.

If I had left it up to doctors it wouldn't have happened.

[sandymbme]

Great thread! It all started for me with increasing GI complaints in 2006. (A mere 22 hours AFTER my health insurance kicked in THANK GOD!) They eventually removed my gall bladder and I really thought that would be that. Just 3 months later, however I got the incredibile never-ending migraine. I saw endless neurologists who dx'ed me with low-lying cerebellar tonsils/borderline Chiari malformation. I was tested for all manner of scary neuro things, but everything came back negative. Meanwhile the migraine kept assaulting me for 9 months straight. I had one truly insensitive doc who insisted I just needed a good antidepressant, clearly I was making this up.

My Mom (who is a nurse) suggested contacting the Cleveland Clinic as it is just 2 hours or so from home. I was seen in the headache and facial pain clinic by Dr. Mark stillman who noticed I had very low BP, but relatively high HR. Hr told me right off the bat that he suspected pots and wanted to schedule a TTT right away. When I went home to discuss it with my neuro, who insisted the test would be a waste of time and money and told me not to do it. I followed his advice for a few months longer, at which point I was definitely borderline suicidal and desperate for ANY relief. Called Dr. Stillman to schedule the TTT, and lo and behold I failed with flying colors!

Suffice it to say that I no longer see that neuro. I now have a great team of docs in place. My PCP is awesome about co-ordinating care with my six million docs. I still see Dr. Stillman for the headaches, and Dr. Blair Grubb is managing my pots. (which thus far refuses to be managed, but no one is giving up yet!) I see Dr. Joachim for GI stuff, and have appt.'s with a new neuro and an endo next week. I got really lucky, my PCP was an ER doc who went into private practice, so she has seen all kinds of crazy things. Dr. Nicholson is very supportive and understanding of even my craziest or strangesr symptoms.

It took 2 years from onset of symptoms to get my dx. I stopped trying to self-diagnose after reading a bunch of scary stuff about Chiari malformation and decided that ignorance is bliss. If not for Dr. Stillman pointing mr in the right direction I would probably still be floundering in misery. Of course, I am writing this right after getting released from the ER for a screaming and horrific migraine, but at least it isn't there every single day anymore! I am still hopeful that someday someone will give me the right combination of meds and other therapies to get at least relatively stable.

Sandy

[erikainorlando]

I had a flu last Sept. Not a bad flu just a flu. I never felt right after that. I felt often that I couldn't breathe but was afraid to say that because they all already thought it was anxiety!!

I stayed out of work for a few months and when I tried to go back I kept landing in the hospital. No one got it...then one day someone took my hr while I was standing it was 150. Holter monitor revealed more problems...sent me immediatly to an EP. EP diagnosed it within 5 minutes!! Did a TTT just to confirm it........but it took months of PCP's telling me I was nuts..I was so suicidal and homicidal by the time I was finally diagnosed...boy what a time of it I had. A very bad time. But that EP...wow..he asked me a few questions and said "yes..I've seen this before..your heart got sick..it is an auto-immune thing". I could have kissed him!!

Erika

[Whitewolf]

well at first i was told i couldnt stand because i was 24 worked 60 hours a week didnt have a boyfreind and lived with my parents who was trying to force me back into infantcy that was by a psychiatrist after my dad told him that i liked working didnt want a bf and lived with my parents cause i was buying a house off them but when i couldnt walk they moved me back in to keep an eye on me dad then told him off still no answers we did some research online and found out from another doc about the cleveland clinic and went there they who knew about it dianosed me with pots then we found some local docs that heard of it but to this day that is the first question i ask docs if the are formiliar with it currently having problems now was told by a group of cardiologist that i went to see that they are cardioligists and it is a problem with the heart therefore all their docs know about it LOL yea right the one i seen wants to send me to a POTS Clinic cause he only had one other patient in 20 years with it so now i am on hte search for a local doc that has more experience wiht it cause the closest POTS clinic he wants to send me to is 4 hours away one way 4 hours one way in car 5 mins can get to me some days aint going to happen currently living with freind who does the driving her husband needs to take off work to take her two hours away she is agoraphobic (recovering so far) but there is no way he can take off work to take me 4 hours one way he is nuts but i try to make sure all my docs have heard of it or will listen to me when i tell them things but we all need one expert on our case or the docs question everything just went through a big thing my PCP didnt want to fill my adderal cause he didnt see the point had to see a cardio for it to get it filled same cardio that wants to pawn me off on someone else so yea finding docs is hard finding one that knows something is harder i pray you have better luck then i am

[Steph]

I'm pretty lucky - it seems like I got a dx much more quickly than most of you, although it felt like forever at the time.

I think, in retrospect, that my symptoms started sometime in late summer two years ago, although I didn't realize it until after I got a dx and started to connect the symptoms.

I "passed out" or "fell down" a few times in late 07/early 08, but I dismissed it - "I must have stood up to quickly," "I guess I haven't eaten enough/had enough water today," etc. It wasn't until early spring 08 when it happened three times in one day (once while making breakfast, twice at work) and I poured boiling hot water over my hand that I figured I should go to the ER. Even then, I thought it was probably just a temporary thing, like low blood sugar or something.

Blood tests: clean.

Multiple types of wires-taped-to-body tests: clean

X-ray: clean

24-hr holter moniter test: some abnormalities.

Problem? At this point I'd recently moved to go to university and I had no GP. My city has a serious shortage of docs willing to take on new patients. So no one was looking at my test results or following up on what was wrong with me. After that first day of suckyness, everything started happening at once.

I went to stay with my parents for the summer and got my old GP to see me. He ordered some tests, and referred me to a cardiologist. 4 months later, his office calls to make an appointment - for 3 months down the line.

Late 2008: I go to the cardiologist. He orders an ultrasound, and in the meantime advises me to eat more salt. Says, "many young women are just "fainters," and we don't really understand why, but in most cases, drinking more water & having more salt will fix the problem." (paraphrased)

Around this time I finally find a GP willing to take me on.

Office never calls me back for follow-up on the ultrasound like they said. Early February 09, I call them and they say it's isn't necessary if I'm no longer experiencing symptoms. What the h***? Would I be calling for a follow-up if I was all better? In the end, I get an appt. for 3 months down the line.

Have some in-office tests. Cardiologist gives me a dx of dysautonomia. (he never specified what "kind" -- I was thinking NCS at first, but further research and the discovery that I go tachycardiac standing up has led me to suspect POTS.) Tells me that that's what he'd suspected when he saw me before, but now he was certain. starts me on florinef, makes a follow up appt. for 3 month's away. Says I can double dosage (.1 to .2) after 3 weeks if I wasn't getting any relief.

No good at all. 3 weeks on, I double dosage and get some very mild relief. (suspect that might be placebo affect, but hey -- if it helps, it helps.) When I go to my GP to ask permission to do so, I get a blank stare and an "Oh, you're still feeling dizzy then, are you?" Well if you read the file the cardio sent you, you would have known that already.

Next appt. rolls around. usual battery of pre-appt. tests. Cardio takes one look at me and says he can tell the Florinef isn't doing enough. Nice, for once, not to have to tell someone that I feel horrible.

Stop florinef, begin midodrine. EVIL. Worse headaches, no relief from symptoms, and after maybe a month, palpitations like WOAH. GP ignores me the first time I talk to her about the latter, then I went back a week and a half later and she orders a ECG-type test done - and books it for the day before she leaves on a 3-week vacation. Subtle, much. In the intervening weeks, I get in contact with cardio's office, and get permission to drop the midodrine & resume the florinef. after about 3 days, the palpitations mostly disappear. That was maybe a month ago. My next cardio appt. is this wednesday, and he's going to start me on ssris, I think. Here's to hoping they help.

Good news is that I've finally found a replacement for the GP of Horribleness. He may be just as awful as she was, but his office is only 3 buildings away from my apartment, so at least it will be easier to get there - no choosing between driving (don't feel safe for more than 10 minutes, really) or taking the bus and walking the last 15 minutes uphill and (recently) in the blazing heat.

Now I just need to figure out a way to get off on the right foot with the new GP (I'm seeing him for the first time in two weeks) and convince him to take an active interest in my condition.

Overall, I think I was very lucky that I got the cardio I did - he's competent, sympathetic while being professional, and while my time with him is always brief, he doesn't rush me out the door and he listens to what I have to say without butting in or contradicting me. On the down side, in addition to his own practice, he's also chief of the cardiology division at the hospital and works there 3 days a week, so it takes a while to get an appointment and he's only available at certain times.

[ajw4790]

For my original dysautonomia dx I didn't come at the answer myself (i.e. self diagnosis).

I moved to a new city to go to grad school. I had issues my whole life, but was able to work around them. With grad school and supporting myself it was near impossible to function normally. I started having more and more issues at school. I started to try to see drs., but there was 3 month waits for everyone. So, after a few months things kinda started to fall into place when my professors got me in to see a neurologist that same week. I would have not gotten anywhere if I didn't get in to see this dr! This dr's specialty is movement disorders and was more interested in the Essential Tremor I have. Up to this point ET was my only diagnosis and I chalked all my symptoms up to it. This dr. realized there was much more going on and started to run tests.

About the same time I finally got a PCP who on the first visit with her diagnosed me with NCS/Vasovagal Syncope due to near fainting spells after showers. I was not familiar with it and researched it, it did sound quite a bit like me, but I wasn't 100% it was the answer because my symptoms are MUCH more frequent. But, even till this day this is pretty much her diagnosis and she is sticking to it.

Meanwhile, the neurologist gets back some tests, and orders Autonomic Testing. I go and do the TTT (PCP was against it), and felt awful. Afterward, in his not so subtle way, the tech asked me if I had ever heard of POTS and explained it to me. So, I guess you could say the tech diagnosed me... But, the results were looked at by a neurologist, and I was dx'd with POTS and Small Fiber Neuropathy (QSART).

I finally started to have answers....

So, without that neurologist that continued to help me a lot as time went on. I would not have gotten these answers. I wouldn't have seen him with out my professors. Which I wouldn't have had contact with my professors if I wasn't in grad school. But, semi-ironically even with getting some answers I was not able to stay and complete grad school.

Later on though, I did start using the internet more and "self-diagnosing" on things like EDS, ADHD, sleep disorders etc.

Thanks for reviewing our stories to look into this important question!

[pat57]

I was DX with pseudoseizures and refereed to a psychiatrist .

The psychiatrist DX epilepsy and put me on Carbomaziphine. The carbomazipine gave me colitus. The psy. said take imodum, I said no, he said get another Dr.

I went to a neurologist who sent me to an EP. And Walah! This took 4 years and I was without a drivers license during that time. I made no attempt to research. What ability's I had were spent mostly doing laundry.

[tilly]

Up until Feb 2007, I was a relatively normal but had always had tachycardia, but nothing like it is now .

A brief outline of my story, just to tell you high lights of it .... And how the internet helped us to get a step closer ?? I had severe chest pain and after this I had an incessant tachycardia where by my heart rate would just sore up and up ... to ridiculous figures .... I was sent into hospital by my Doctor ... they thought it was a clot on my lung but the CT was clear .... they did the usual 24hour urine test and that was pretty much that ....

This went on for two years and my cardiologist was seeing me every three months and saying and doing nothing .... apart from saying it is rare what is happening to you, I have only seen this a few times .......

I Googled (tachycardia) , and then ( huge exaggerated burst of tachycardia every time I move ) and then (incessant tachycardia ) ... the only three things that came up where pheocromocytoma, inappropriate sinus tachycadia and pot?s.... these where giving a definitive overview of my symptoms with the tachycardia being the dominant symptom ...

I took copies of these to my doctor who sent them to the cardio who said yes it is this .... when I saw him on my next appointment we discussed it and he said that I have been a rare case and pot?s is very rare but difficult to diagnose .... but it is pot?s that I am suffering bc he has witnessed all of the symptoms of the tachy every time I move and so no .... along with the ECG monitoring.

I was sent to see and EP who also said it is pot?s and ?ist? they are overlapping syndromes and how I am affected he would say it was more pot?s ......

They where open to the discussion and said well done for finding out about pot?s and ?ist? ....... I got the feeling that they thought the conditions where to rare for then to come across ...... I think I have been lucky with their attitude as they did not discount the internet ?

After all it is a part of everyday usage now and they themselves look to the internet for answers ??. people are more aware and better informed than they have ever been it is the 21st century after all ?..... I don't think it a case of dx'ing oneself .... More a case of people won?t take ?I don?t know? .. for an answer anymore ?.

[toddm1960]

Short and sweet version, I saw 27 doctors over 3 years. Each time they either said "I have o idea what's wrong with you" or "it's all in your head" I would fire them and move on to another. Researching on the internet I found dysautonomia could be my problem and a TTT could dx it. I asked my neuro to find a doctor that could give me one, and bingo.....sure enough. My guess is 90% of us on here have dx ourselves.

[Csmith3]

I tried the tell your doctor your symptoms and hope they come up with a diagnosis and it didn't work. I do think POTS is a difficult one as we tend to hold back from telling the doctor all the symptoms from fear of being labelled a hypochondriac. But certainly when I first went to the doctors about 20 years ago, it wouldn't have mattered if I had told them all or not given the lack of knowledge on dysautonomia. What continues to annoy me is that instead of saying they don't know, they feel they have to diagnose something categorically even if it's the wrong thing. I spent a lot of time and energy disproving incorrect diagnoses instead of looking for the right diagnosis.

After about 10 years of trying, my doctors got close to the right diagnosis, but not close enough. In the end it was me plus the internet/an online academic library I had access to due to a part time course that enabled me to self diagnose. I found a review article on POTS and was convinced I had found the answer. To be fair, so did my GP.

I smiled when I read the bit about leaving the doctors to do their job. If you have a good doctor, that's fine. If you haven't, it's lottery time. I am now very intolerant of poor doctors and have no qualms about showing them up if they give poor advice. And I'm afraid that in the UK, there are quite a few of them in general practice which is often considered the poor relation to hospital medicine.

[EarthMother]

Ahhh DINET or the Diagnosis? Which came first?

Love this question.

For me it is probably all in a name and the particular name of POTS that I have been given at this time of my life. In my early twenties a Doctor noted in my medical chart that I had "tachycardia on mild exertion". By my early 30's the "diagnosis" was orthostatic intolerance. I even had a tilt table test way back in the early 1990's that confirmed OI, but still no one seemed to be too concerned or offer any suggestion other than compression and salt.

It wasn't until I stumbled upon DINET during one of my crashes when I was around 40, that I learned about POTS/Dysautonomia. So with a little blood pressure cuff and hundreds of data samples I could chart and see at an objective level what was going on in my ANS dysfunctional body. I showed the charts to my PCP who sent me to a cardiologist who ordered a tilt table test (2003 if I recall) to confirm POTS.

But I have to say, for me POTS still seems to be only a symptom -- much like "tachycardia on mild exertion" was almost 30 years ago. As we all know there seem to be various types of POTS and though some of us have found a root cause (EDS or Mast Cell Activaton), that has not thus far been the case for me. I certainly have POTS and I am certainly disabled by the impact of a dysfunctional ANS. But without knowing what is causing my POTS ... it feels a bit more like yet another symptom rather than diagnosis in an otherwise complex web of not knowing.

[firewatcher]

Hey All-

I'm researching a possible article for the DINET newsletter and I'd love your input. I'm exploring this topic because I repeatedly see doctors on TV warning patients against DXing themselves, researching their symptoms on the internet, etc. They advise patients to share symptoms with their physicians and passively wait for that doctor to magically come up with a DX and treatment plan. Did it really happen that way for anyone here???

I regularly see most of you becoming educated medical consumers (YES-learning via the internet!), bouncing ideas off of one another, comparing symptoms, finding trends, etc, and then advocating for yourself in seeking a DX- often going from one physician to another....until you find one who "gets" it or who is open enough to learn with you. And, then I see many here educating their physicians!

Are we doing it wrong? Or is their another path for patients that needs to be brought to light?

Share the story of how you obtained your DX (if you have one .) I want to hear your stories!

Thanks in advance-

Julie

Actually, my current doctor is very encouraging of my research. He has even offered his reference books for me to look into some of the rarer chemical exposure symptoms. (I don't have an ordinary job and come into contact with some rarer heavy metals.) He does read what I bring him and then we discuss each possibility. He acts as my "curb" so that I do not veer off track; if something looks like it needs to be investigated, we go down that path and see. So far, he's the only doctor I've had who's said "I don't know." But, he always gets me to the right person to find out.

[daisy]

I started having symptoms after the birth of my 2nd child, approx. 12 years ago. I was diagnosed with fibromyalgia a year after her birth and that went into remission a year or so later. I then started having the severe tachy and crazy heartrates/syncope. The first cardio I saw said it was nothing or that I had a pulmonary embolism that resolved itself (and he thinks that's nothing?!!!) and just gave me a bit of beta blocker. This helped for a bit until about 8 years ago when everything broke loose again. Symptoms came on with a vengeance. Primary care suspected something vagal but wasn't sure. I was so fortunate to get to my current EP cardio who was familiar with POTS and immediately ordered a tilt. Diagnosis came right away.....then sent to a neurologist who diagnosed a deed-seeded vestibular issue (which I never quite understood) and also a ENT who said I was also having silent migraines. Never quite came to a consensus about those things. A couple years after the POTS diagnosis, I started to have bouts of atrial fibrillation, atrial tachy, inapproporiate sinus tach and SVT. So that has just added to the joy of being me! Fortunately, I love my cardio and he helps me with all of the above. So, I didn't have nearly the horrible time others did with getting diagnosed. I started researching POTS after my diagnosis and everything made so much sense. I had never heard of it prior to my tilt test. Through the whole 12 years, I experienced severe dizziness, syncope/near syncope and awful tachycardia. Like everyone else, I just tried my best to get through each day while knowing something was very wrong.

I am grateful for my Drs. who were as determined as I was to figure it all out.

[carinara]

I remember having weired symptoms on and off when i was a child. Then in my early teens i started getting very high Heart Rates and i felt dizzy and shaky a lot. Our family doctor prescriped me a Beta Blocker because my Blood Pressure was also higher then it should have been. Even though i was only a child then, i do remember the bad reaction i had to this Beta Blocker. The Problem was that after my doctor explained to my parents that there was nothing wrong with me and that it might just be a nervous reaction i suffer from, my parents started to think that iam "too sensitive". But like i mentioned, the symptoms werent present all the time back then, i had a more or less normal childhood healthwise. Then after my daughter was born i started to get very sick. I felt i had no control or influence on my body anymore. My HR and Blood Pressure were very high and i couldnt stand up without crazy symptoms. My daughter was only a baby then and i remember calling my mother quite often because i was laying on the floor crying and unable to get up and change my daughters diapers because my body didnt allow me to stand on my feet. Back then i saw our family doctor again, he didnt know what to say, exept that he thinks that i propaply have too much stress at the moment and that i just need to relax. I knew something major was wrong with me and i told him i need to see some kind of specialists. Well, i did get to see a few, but nobody could help me. They didnt find anything wrong with me. They made me try out different medication and when i had serious side effects they said that they would go away if i keep taking the tablets. After it didnt get better, i stopped them myself and slowly i felt a little better again but never quiet right. 2 years later i had a bad crash again. By then i have already watched and studied my body reactions very well. I went to see different doctors including our family doctor again. Now i told him that my HR doubles up as soon as i stand up, i even demonstrated it to him, but he had no clue. I was home and bedridden and my body was doing crazy things. I found something on the internet about orthostatic problems and confronted my doctor with it but he said that i would be too young for that. Because my health situation didnt improve, i had to stay in 2 different hospitals but they couldnt help me either by then i got told that i might suffer from an anxiety disorder and panic attacks because i refused to take my daughter somewhere on my own in the car. I kept explaining that i dont like doing those things anymore because i cant trust my body and i feel so sick and dizzy on a daily bases, but nobody took me serious. It took 4 months before i could return to work. I must admit that after many months of searching and trying to find out whats wrong with me i started to think that it might really be an anxiety problem. I read many books about anxiety and Panick and saw a therapist i tried to stick to the tipps he gave me, like putting myself into as many anxiety situations that i can. I honestly stood in extra long lines, almost fainted, went to the sauna with a HR of 200+ drove on the autobahn without being able to see right, all these times i knew that there must be something else wrong with me. Then in 2007 came my last big time crash that left me totally bedridden. I couldnt get up at all, my partner carried me to the hospital. By then i was an expert on my symptoms. I took my pulse watch and showed them, but nobody had a clue, they gave me diuretics to get my BP down and didnt know how to handle me when these diuretics caused the worsed tachyc.episodes i ever had. When my boyfriend carried me home 1 week later i searched the internet again but this time i decided to look into english sites. An angel must have sat next to me when i found this wonderful Dinet Site. When i read through the symptoms and what to avoid section on this web site i started to cry so much. I knew straight away that thats what i suffer from. All these points mentioned there were exactly my experiences. It was like the light on the end of a 10 year long dark tunnel. I found the adress of Prof. Hilz here in Germany on the Dinet doctors list , and made up an appointment at his hospital. When i went there 2 Weeks later i had all the autonomic tests including a TTT wich they had to stop after a few seconds because my pulse went from 80 to 160 and i couldnt tolerate being upright anymore. I bet i was the first and only POTS Patient that cried in his office because i was so relieved and happy to finally have a diagnosis. After that i changed our family doctor. Now i have to teach my new doctor about POTS and she keeps appologizing to me because she feels sorry for me because she cant help me because she doesnt know anything about POTS. From all these many years of suffering i truly learned that i have to look after myself and not wait for doctors to find solutions. If i would have got a diagnosis 10 years ago, everything would have been much easier for me and my family.

God bless Dinet and all of you as well.

Lots of love from carinara

[futurehope]

For years, I noticed I had less stamina than other people. My heartrate tended to be on the high side. Doctors attributed that to my thyroid medication.

Fast forward to post-menopause. I became increasingly unwell, dizzy, severely fatigued. I looked up my symptoms. My Mom gave me a newspaper article on mitral valve prolapse and some of my symptoms matched. I did some research and read about neurally mediated hypotension.

I call up Hopkins and asked their referral service for a neurologist who treats neurally mediated hypotension (which I thought I might have after my research).

The name of a doctor that I was given was the doctor I still see. He listened to me explain my symptoms and said, "I think you may have POTS. I will need to test you and see". Voila!

[Dawg Tired]

I was extremely blessed. In April, 2002, I was having chill/sweat/dizzy cycles so I went to my doctor. He told me I had a virus and I would be over it in 10 days.

2 weeks later - same thing + fatigue so I went back to doctor. He again looked me over, and this time ran a few blood tests and told me I would be better in 10 days. I went from doctor's office back to work and on my way to my desk stopped in my boss's office and let her know what I was dealing with.

At that time I was working for the insurance company who carri insurance. I knew my claims would cross her desk and I didn't want this to be a surprise to her.

So when I fainted in my front yard, she had an idea something else was going on.

My PCP then told me it was all in my head. Again - I was fortunate. One of the administrative assistants at work was married to an anesthesiologist and he was very curious about my case. When my doctor refused to refer me to a specialist, (insurance would cover - but no one would accept me without a referral!) the anesthesiologist himself called a local pulmonologist who was board certified in 4 specialties. HE gave me a thorough exam, ordered a TTT and diagnosed me.

So it took from April to October of 2002.