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The Road To Getting Diagnosis.


Did you have difficulties getting doctors to believe you?  

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During my journey there was so much that was dismissed as anxiety and depression. Every doctors visit was dreaded because I just knew that it was all in my head. Thats what I was told for the longest. The symptom that finally broke through the wall of disbelief was my heart rate. I had seen a video describing the poormans tilt table test. When I did it I was shocked. That was the turning point in my diagnosis path. The nail in the coffin was my stress test. During the first incline my heart jumped to 275bpm with a 200/110. Never the less still took trips to specialists in dysautonomia to get the final diagnosis. The question I have is if you experienced the hasty dismissal yourself and what was the turning point for you. My hope is to help others that stumble upon this forum and post that it is a long road to dx and what helpeped in uncovering your diagnosis and maybe just maybe it will shorten someone else time. The second worst part for me was the disbelief and so many test that came back negative.

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Like you during my journey I often heard from doctors that I was just depressed or stressed out from being in college (I checked no to first question, as they never said anxiety). After, going to countless doctors one did diagnosis me with CFS and pretty much told me to go on and live my life. I thought CFS fit too a point but couldn't explain everything. It wasn't until I ended up in the ER with my heart rate going from 50-60 laying down and 160+ standing up that the doctors sent me to see a cardiologist. All they could tell me in the ER was that they don't know what is wrong but something is gong on. I did google high heart rate and found PoTS and was expecting when I met with the cardiologist the next day he wouldn't even bring that diagnosis up as I read not many doctors knew about it...well much to my surprise after telling him my life history and what I had been going through for the last 3-4 yrs he said two things that changed m life 1: was he told me he didn't think it was in my head or depression, there was something going on and 2: that he thought I may have something he has heard of called PoTS...from there he sent me to an internist to rule out other things and then officially diagnosed me a few months later. And yes like you it was so hard hearing time after time that every test was negative..the only positive tests I have ever had was for a strep infection in my blood and low Vit D.

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I just think back to all the times I kept getting told to exercise and trying to explain how I felt.

I often think if just one doctor would have checked vitals while standing how quickly it would have pointed them in the right direction.

I have had this so long that my high heart rate felt normal, even the 275bpm felt like anyother time I was active. I was acustom to it so I never complain about it as a symptom I alway thought that is how everybody feels.

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I think about this very often. It just upsets me so much how I was treated, and still am treated by some health care practitioners who are not familiar with POTS. I literally had to pass out in a doctors office, while my HR was being monitored, for anyone to really pay attention to what was going on. Even though doctors have always commented on my sometimes low blood pressure, as well as my heart rate ("Oh you must be feeling anxious huh?" ughhhh). This is why I feel so strongly about talking about my illness with people, because if someone else is going through the same symptoms maybe they can realize that it is not imaginary or all in their head. Just knowing what is actually going on with my body has helped me SO significantly, I don't want anyone else to have to deal with the daily panic of not knowing why they are feeling the way they do.

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It took years and many dismissive Doctors before I was finally diagnosed. It was during an echo-stress test when I mentioned to the cardiologist that I feel better lying down. He thought of orthostatic hypotension and took my bp lying down and then asked me to stand. Since I was still hooked up to the monitor, I saw that as I sat up my heartrate went from the 70's to the 110's. I thought to myself, I don't think that's normal, but didn't say anything. Once I stood up the nurse took my BP and said it dropped 30 points. The Dr. diagnosed OH, suggested Florinef and sent me home. I then looked up orthostatic hypotension and found all the info about dysautonomia and POTS, got a BP/heartrate monitor and started testing myself. I found no OH, but POTS instead. I think because my BP is hard to find (it takes many tries because they say they can't hear it - whatever it is), the nurse made a mistake about the OH. Thank goodness for that mistake because if it hadn't happened I would have never been clued into dysautonomia and would probably still be sitting here undiagnosed. This at least pointed me in the right direction. I then went for autonomic testing with a specialist and he diagnosed POTS.

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I found this poll interesting. I've just been diagnosed with POTS after almost 20 years of illness. It seemed that everytime I was sent to a different specialist, if it turned out that whatever was wrong with me, wasn't their specialism, then they would send me back to my doctor with a diagnosis of anxiety. I do have anxiety, but as a result of the illness, not the cause of it. What astounds me the most is that no one ever offered me treatment for anxiety, and also that none of the people diagnosing me, had any qualifications in mental health. I wish they realised how hard it then makes your future road, as every time that diagnosis comes up again, the next doctor takes you less seriously in finding out what's really going on.

I finally had a breakthrough after another batch of blood tests suggested Addison's Disease, but when further tests proved negative, I was pointed in the direction of possible POTS, and finally to a specialist that knew what they were talking about. At last!

One of the most disturbing occasions on the road to diagnosis, was seeing a new doctor, who told me that I'd been abused as a child. Horrified, I told him that he was completely wrong and that I had a very happy childhood. His response to this was that the abuse was so painful that I've blocked the memory out, which has caused me to keep fainting. I really wish I'd reported him now, but at the time I was so upset I just withdrew from medical professionals as a whole.

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I found this poll interesting. I've just been diagnosed with POTS after almost 20 years of illness. It seemed that everytime I was sent to a different specialist, if it turned out that whatever was wrong with me, wasn't their specialism, then they would send me back to my doctor with a diagnosis of anxiety. I do have anxiety, but as a result of the illness, not the cause of it. What astounds me the most is that no one ever offered me treatment for anxiety, and also that none of the people diagnosing me, had any qualifications in mental health. I wish they realised how hard it then makes your future road, as every time that diagnosis comes up again, the next doctor takes you less seriously in finding out what's really going on.

I finally had a breakthrough after another batch of blood tests suggested Addison's Disease, but when further tests proved negative, I was pointed in the direction of possible POTS, and finally to a specialist that knew what they were talking about. At last!

One of the most disturbing occasions on the road to diagnosis, was seeing a new doctor, who told me that I'd been abused as a child. Horrified, I told him that he was completely wrong and that I had a very happy childhood. His response to this was that the abuse was so painful that I've blocked the memory out, which has caused me to keep fainting. I really wish I'd reported him now, but at the time I was so upset I just withdrew from medical professionals as a whole.

Such a similar thing for me. While suspecting gallblader problem, I got to the point of saying if this is just all in my head just commit me because I can take it anymore. His response of it can't all be in your head some of your blood work came back with high readings. That's is what led me to Google my symptoms and to suspect Dysautonomia HYPERANDRENIC pots and EDS3

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I voted that it was my doctor who suspected POTS first, but that was after I had already seen who knows how many other doctors. At the time, a nurse had seen me after I fainted and hurt myself and had trouble regaining consciousness on campus and paramedics took me to the student health center. She checked me for a concussion and then told me to stop skipping meals (yeah right). I knew something wasn't right so I complained to the director of the center and made an appointment with a different doctor, who just by chance was a neuro who had done research on POTS and related disorders. I'd really like to see her again, but I can't even contact her because I'm not a student anymore and the health center office/operator won't put me through.

Before that, though, beginning in middle school, I had been diagnosed with anxiety and panic disorder and put on various meds, none of which worked. I just started thinking of myself as a freak and tried to hide my symptoms as best I could. Even as a teenager I was sick of doctors dismissing me so I stopped complaining. I only went back to the doctor when I was taken there by the paramedics in grad school. At one point, I did a few months of therapy at the suggestion of a doctor, which, unsurprisingly, did nothing for my attacks. I know there are a lot of hypochondriacs in the world, but it upsets me that doctors don't take every patient seriously. I don't care if you went to medical school, I've lived in this body my whole life and I know it better than you do.

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I'm afraid that until someone rich and famous comes down with a form of dysautonomia, there won't be much attention paid to the related diseases - especially the ones that are fairly rare. - this includes teaching and education about dysautonomia at medical schools, nursing schools, and other related professions. Most physicians and nurses have never heard of dysautonomia and since it is relatively uncommon, they have no idea what to do with someone who has all of the wide-ranging symptoms. I've never understood why a medical professional is dismissive or quick to jump on the psychiatric band-wagon when they don't know the answer or are presented with a cluster of symptoms that don't seem to fit together. What happened to "inquiring minds"? - It is not acceptable in my office to say "I don't know" and simply walk away. The correct answer is..."I don't know right now but, I'll keep digging until I find out". When I used to work directly with patients and was asked a question I didn't have an answer for, I simply told the patient the truth: "I don't know - let's find out" - sure, it takes a little longer and sometimes a lot of research and digging but, it usually resulted in an answer and definitely improved patient satisfaction and confidence.

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I would say very fortunate that you didn't have to endure the long road to diagnosis. I mean that in a good way. I actually believed for a while that everything I was experiencing was self induced by some subconscious action that I had no control over. That is in and of itself is the worst place to find yourself.

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My son was dismissed by doctor after doctor, told he didn't want to go to school, anxiety,etc...Finally a psychologist researched the symptoms and put us on the right track, thinking it was some form of OI. That was 3 years before we got the correct diagnosis and that was 4 years ago. It took until this year to get the additional diagnosis of MCAS.

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I would say very fortunate that you didn't have to endure the long road to diagnosis.

The whole process took about a year from the er visit, to a actual dx and treatment. I wish I would have been a little more aggressive since I settled for way to many "increase water and salt" before I decided to try medication. I guess my experience is a bit different in that I have had issues/disability since childhood, and things were very gradual over the years. It was easy to ignore worsening symptoms, and it wasn't till I was fainting multiple times a day that I decided to seek help.

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This was the most difficult part of the whole thing for me...knowing something was wrong with me physically and being dismissed. Most of the docs were subtle in their dismissals or suggestions of depression/anxiety. But, my two favorites are these:

One endocrinologist (the same one that dx'ed my mom with Hashimoto's) after taking an hour long medical history, paused and then said, "When was the last time you had a boyfriend?" REALLY???!!! I told him I was sure I was not projectile vomiting due to a lack of intimacy in my life and that he should move on from that line of questioning.

Then, a cardiologist, after spending 3 minutes in the room with me, told me that he was sure if I just committed to getting up a half hour earlier each morning to walk around the neighborhood, 95% of my problems would go away. I told him, as I ripped my paper gown off of me and started putting my clothes back on that my mother would have to scrape me up off the sidewalk if I did that and that I thanked him very much for helping me chase my tail. That was as I was leaving the room.

I can look back on those moments and laugh now but I at the time, I was madder and more offended than any other times in my life. I did file complaints with both of their bosses and was clear that I didn't want anything from them except to protect future patients from the same behavior.

But, that nasty cardiologist was a gift in a strange package. His behavior spurred me to take a different tact with all future doctors and even my current PCP. I had been an operations manager for my entire working career and I never would have allowed anyone to "treat" the businesses I worked for, the way the doctors were treating me. I left that cardio's office and decided that from then on, I would run my medical care the way I ran any business....with the highest level of service expectations and the most efficient and organized care...on my part and on the doctors' parts. I reminded myself that they are my "vendors" and they don't have to get my business. I'm clear at my first appointment with any new doctor what my reasons for being there are and what my expectations are. In return, I am meticulous about record keeping, completing paperwork ahead of time, accurately, and completely, showing up 15 minutes early for all appointments so we can complete check in and not interrupt the schedule for other patients, and having a list of changes/questions/etc. prepared on paper with a copy for the doctor. So far, that has changed the whole relationship I have with doctors. I haven't been to one doctor and had a bad experience since then. I think the difference is that I took my power back. I had, as we are trained in our culture to do, given the power to the doctors. I know now that I need to be the managing partner in the relationship.

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My very patient and never dismissive :) GP after numerous referrals to ENT, neuro, cardio etc..decided to test me for my adrenaline levels when no one could explain my tachycardia and other symptoms- and when my levels came back sky high she referred me to an endocrinologist as she thought I had a pheochromocytoma. The endo did not think that was the case as I did not have the high BP and because my symptoms came and went. He was the first one to say "this sounds like something called POTS. My colleague Dr Schondorf spoke about this recently" then..my internet searches began and I could not believe how everything matched. Long story short, Dx confimed by tilt table test and Qsart and here I is .... Did have my share of not necessarily dismissive but just not conscientious MDs. I remember one cardiologist asking me if I was sedentary - I explained I wasn't as active as I used to be but, and no joke, this is exactly what I said, "but shouldn't I be able to stand up without my heart rate getting so high?" He put me on monocor and sent me on my way. I keep thinking I should send him a note in the spirit of increasing awareness.

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I would say very fortunate that you didn't have to endure the long road to diagnosis.

The whole process took about a year from the er visit, to a actual dx and treatment. I wish I would have been a little more aggressive since I settled for way to many "increase water and salt" before I decided to try medication. I guess my experience is a bit different in that I have had issues/disability since childhood, and things were very gradual over the years. It was easy to ignore worsening symptoms, and it wasn't till I was fainting multiple times a day that I decided to seek help.

Looking back I can see how it was slowly affecting me for years. Although I always was told I was fine I gave up seeking help. I fought hard until about 3 years ago when the visual symptoms began and i couldn't work through not seeing clear. But was told everything from I was drinking too much caffeine to conversin disorders. Which I started hoping and believed it was. The pain started to worsen and the symptoms began developing faster. That was hard believeing I was causing it and I couldn't fix it. But by no means do I discount the difficulty of living with this no matter how fast or slow the name comes for what it is that is affecting you. This not only affect every aspect of your life your family and friends are affected as well. I never want to minimize what any of us go through, too many others I encounter do that enough .

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I know exactly where you're coming from, Robert. I've had periods where I've felt completely mind-mashed from self doubt. Is it something I'm inadvertently doing to myself? IS it all in my head and I somehow make the faints happen, or let them happen? It's a horrible, horrible place to be, and I found myself swinging from complete self doubt, to outraged chip on my shoulder for not being believed. Having a diagnosis doesn't make the illness go away, but suddenly I can put all of that mind chaos behind me and begin to understand what's happening to my body.

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I know exactly where you're coming from, Robert. I've had periods where I've felt completely mind-mashed from self doubt. Is it something I'm inadvertently doing to myself? IS it all in my head and I somehow make the faints happen, or let them happen? It's a horrible, horrible place to be, and I found myself swinging from complete self doubt, to outraged chip on my shoulder for not being believed. Having a diagnosis doesn't make the illness go away, but suddenly I can put all of that mind chaos behind me and begin to understand what's happening to my body.

I was trusting the old anxiety dx without a know as the old doctor put it. I was told if I just believe him it would all go away. I guess part of me was hoping he was right. I was so convinced I started asking that he commit me because I was getting worse.

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I voted that I figured this out. But really, it was a combination. I spent about nine months, with doctors telling me I had a disease, anxiety, that I needed to treat that and I would be better, then they added I had a eating disorder. Even though, I told them I couldn't eat anything because I was so sick. I was told, GERD, anxiety and eating disorder. But, I got so bad I ended up being admitted for 4 days to a hospital, only because one cardiologist listened to me. I told them it changed from lying, sitting and standing. She actually took my bp this way for hours and then admitted me. The most validating thing was when she told me, "No, anxiety could not cause this. The FBI/CIA would want you if you could make your body do this" But she also, said it was beyond her realm.

So got me on some bp meds and started the tests for pheo and sent me to an endocrinologist. Told me I would continue to have flares until this was figured out.

I had made an appointment with a psychiatrist during this time, because another docter felt it was anxiety, and like another poster on here, I thought if that was what was causing it, then fine, just fix me. On the second visit to him, I told him about the hospital stay and he told me you have dysautonomia and he wrote it down and said give this to your doctor. Oh and you don't need to see me anymore.

Those two doctors helped me on my way. The bad part is I still don't really have a doctor that treats me. I have met one cardiologist that did the ttt, and felt it indicated some form of POTS. But she also seems to only know what to do if you are a low bp POTS, and I am have high bp. I have just recently come back from Cleveland Clinic, but so far, nothing, I am not presenting like typical POTS. So I am just struggling every day. My CC tests seemed to trigger something and I am in a middle of flare that is worse than any in almost a year. I wouldn't mind so much, if they had provided answers :( I am just hopeful that CC doctors will continue to search with me.

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I voted that I figured this out. But really, it was a combination. I spent about nine months, with doctors telling me I had a disease, anxiety, that I needed to treat that and I would be better, then they added I had a eating disorder. Even though, I told them I couldn't eat anything because I was so sick. I was told, GERD, anxiety and eating disorder. But, I got so bad I ended up being admitted for 4 days to a hospital, only because one cardiologist listened to me. I told them it changed from lying, sitting and standing. She actually took my bp this way for hours and then admitted me. The most validating thing was when she told me, "No, anxiety could not cause this. The FBI/CIA would want you if you could make your body do this" But she also, said it was beyond her realm.

So got me on some bp meds and started the tests for pheo and sent me to an endocrinologist. Told me I would continue to have flares until this was figured out.

I had made an appointment with a psychiatrist during this time, because another docter felt it was anxiety, and like another poster on here, I thought if that was what was causing it, then fine, just fix me. On the second visit to him, I told him about the hospital stay and he told me you have dysautonomia and he wrote it down and said give this to your doctor. Oh and you don't need to see me anymore.

Those two doctors helped me on my way. The bad part is I still don't really have a doctor that treats me. I have met one cardiologist that did the ttt, and felt it indicated some form of POTS. But she also seems to only know what to do if you are a low bp POTS, and I am have high bp. I have just recently come back from Cleveland Clinic, but so far, nothing, I am not presenting like typical POTS. So I am just struggling every day. My CC tests seemed to trigger something and I am in a middle of flare that is worse than any in almost a year. I wouldn't mind so much, if they had provided answers :( I am just hopeful that CC doctors will continue to search with me.

It is difficult not to have answers, even worse when you know and can't get doctors to listen. My diagnosis of HYPERANDRENIC POTS came from the increased heart rate and blood pressure upon upright and exaggerated with exertion. There's a way to also check the levels of response of you autonomic nervous system while in the the positions of laying down,sitting up and standing. Since they left me hooked up to the ekg and the monitors showed dramatic increase she didn't feel like it was necessary to also check the blood work. I can go from 75bpm sitting to 130+bpm just standing even on several beta and alpha blockers. This happens very quickly, no need to wait minutes. Needles to say I am still being experimented on to see what will help.

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From the age of 8 to the age of 22 I was bounced back and forth between neuro and cardio, having ECG's and EEG's over and over again. Everyone kept saying they could find nothing wrong until at 22 a neuro misread my EEG and mistakenly diagnosed me with epilepsy. When his meds made me exponentially worse I spent a week in a hospital, and was told by a cardiologist that I should see a psychologist. Luckily I was passed to a better neuro who finally realized I needed to see an electrophysiologist. Once I got there I was diagnosed on the first visit with a TTT.

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Funny thing about that last question:

Who suspected that it was possible dysautonmia first?

It was my first Cardiologist that suspected it first, but he never followed up on it or even told me about it. I found out later when I requested my medical records from him. He had written "possible POTS" in the notes from my first visit with him. I could have been diagnosed 6 months after my symptoms began rather than a year and a half and a million tests later.

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I cold called an EP that is listed on this website. I told him I had POTS and wanted a TTT. He was like...hey not so fast there. I told him if he did not want to do it, then I'd go to someone who would. I was not about to go through all of that stuff again.

Before I knew it was POTS I got the run around for sure. I simply did not understand how I could have so many symptoms. I gave up for many years seeking help and then eventually after knowing it was POTS, I decided to finally go ahead and get the dx. None of the doc I've seen over the years have been especially helpful. Not even POTS docs.

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