Cardiologists Nurse Report, Again, Going To Get In The Way Of Diagnosis.

[joshrandall]

Wow I am so upset, and frustrated once again after my initial appointment, the nurse then has sent the letter through th e post which im guessing is a copy of the report that reads.

I have reviewed Josh in the clinic. As you are aware this gentlemen had palpitations which during his event recorder tracings showed that three of the events were due to an isolated ectopic beat.

Josh came to us today obviously with an agenda (again, painting this negatively) relating to a possible diagnosis of POTS syndrome. He has obviously been doing some internet searching in line with the symptoms he has been having. Some of his symptoms are related to an awareness of a more forceful faster heartrate an awareness of different sensations in his body including muscle aches and weakness. he has also noted that his hr increases substantially from a sitting to standing position and that he generally feels quite tired and lethargic at times. (This is all good then he goes on to say how nothing physiologically wrong)

Then states

I have explained that having a diagnosis of POTS syndrome is a very difficult process and one which requires a number of different tests. I have also explained to him that most of the symptoms he has do not meet the criteria for POTS syndrome at all. I explained importance of exercise and fluids etc.

Obviously Josh does have his own feelings on the symptoms the he has and this a very individual thing. I hope by todays consultation he feels reassured that from a medical standpoint we do not feel he meets any of the criteria relating to POTS syndrome but this is certainly something we would not dismiss due to the complexities of the problem and the difficulty in achieving a diagnosis.

Goes on to say do not plan to see me in next 6 months and that to take it up with you (gp) if problems in future.

Erm what? dont all the symptoms specifically match pots syndrome that im having? like sitting to standing fast hr, the blood pooling im seriously confused again this guy said that, you need to be having black outs which again pots uk is quoted as saying only 30% have black outs.

Incredible hes contradicted himself in this letter, now it gets down to whether a gp wants to justify turning me away via this or, actually realize that it contradicts itself.

Does this read like a letter to justify not doing tests? I have previous history on my repeats of negative paintings of my suspicions of pots, like from a former gp "thinks he has neurological condition".

Sigh.

[stellaluna]

Oh Josh, I feel your pain and frustration. What a slap in the face to read a "professional"'s report so obviously non-objective--the "agenda part" (I've been there too both with the "professionals" in front of me and reading words and my misquotes on charts and reports and placing judgement. Please don't give up the fight. If you don't have good medical professionals on your team, you have to be the sole advocate for your self. Obviously easier said than done.

I know that everyone's insurance plan and medical financial situation is different--but... Each time I was met with difficulty recently, I moved on to a new doctor /facility. Unfortunately, this was fairly costly (with copays and deductibles). Even one of the "difficult" cardiologists who said after some battle "even if it is POTs, there's nothing I can do for you" and when I was tearful raised her voice at me and told me to stop crying, that wasn't helping and "stop thinking of myself as a sick person, I'm fine"---even this cardiologist did relent and give me the Tilt Table Test I pushed for (some cost out of pocket for me and ultimately a positiveTTT) I never went back to her after that.

I finally have a good doctor who listens and has knowledge of dysautonomia and have begun the trial/error process of treating POTs symptoms ( he said the primary diagnosis is a rise of 30bpm upon rising).

Best wishes in finding hope and a treatment plan and a good medical team,

stellaluna

[Katybug]

I'm sorry joshrandall. This is the toughest part of dealing with doctors...the ones that are dismissive.

For the record, the diagnostic criteria for POTS does NOT require a black out/syncope, etc. And, in fact, does not even mention any level of syncope. And, there is really only one test that determines POTS, and that's a TTT, or the simulation of the TTT, known as the poor man's tilt test. (I should add that there are other tests that have the potential to pick up on the POTS because they happen to be monitoring your HR, such as a Holter monitor, or a stress test, but they are are not necessary to diagnose POTS.)

[MomtoGiuliana]

I'm sorry you are going through this. The symptoms he does list (and apparently does not deny you are experiencing) are POTS symptoms. So it seems if a specialist were to review these notes they would likely want to rule that out with a TTT. Unfortunately many doctors do not understand how disabling this condition can be. Also I know from personal experience that doctors generally do not like it when patients try to research and/or self-diagnose. I hope you can see a specialist soon.

[jeanlit]

So sorry to hear of your situation. Know that many people, including myself, had a hard time getting diagnosed. My situation: I was "falling" and had no energy. Underwent a cardiac stress test. They ignored the rise in pulse, and continuous drop in BP until it was 82/0 and they tried with 3 BP cuffs to get a blood pressure on me. Finally I took the worksheets to my sister's doctor who got a clue. Went to Cleveland Clinic who ran me through all the tests that showed the problem. This after 2 years of going to doctors trying to get help.

My suggestion: Get another doctor. On first visit, be upfront but do not provide any self-diagnosis. Relate how the symptoms are interfering with your life. Explain that you need help because you need to function.

[joshrandall]

So sorry to hear of your situation. Know that many people, including myself, had a hard time getting diagnosed. My situation: I was "falling" and had no energy. Underwent a cardiac stress test. They ignored the rise in pulse, and continuous drop in BP until it was 82/0 and they tried with 3 BP cuffs to get a blood pressure on me. Finally I took the worksheets to my sister's doctor who got a clue. Went to Cleveland Clinic who ran me through all the tests that showed the problem. This after 2 years of going to doctors trying to get help.

My suggestion: Get another doctor. On first visit, be upfront but do not provide any self-diagnosis. Relate how the symptoms are interfering with your life. Explain that you need help because you need to function.

I have just emailed the Patient and Liason Service with a detailed email, about the contradictions this nurse has made. And they have responded promptly with saying they will investigate and that they have asked the cardiology department to reply asap. So fingers crossed. Although im not holding my breath.