u/Wide_Tune_8106

July: MRI performed; damage from what would later be identified as a heart attack called 'normal variation' and dismissed. No further medical investigation.

September: independent review identifies prior heart attack and significantly reduced septal MAPSE.

September: I send the specialist report directly to my current cardiologist and request that it be incorporated into my NHS records and discussed for management.

Response: no substantive clinical response; only a thumbs-up emoji from his secretary, no appointment booked or even acknowledgement of the findings.

GP records that she cannot determine whether I need cardiac medication and will not code the diagnoses because there are “2 conflicting reports” and specialist input is required.

Current administrative position: The GP then sends two identical requests for advice on medication to both hospitals two weeks after she said she'd do it. Am I on planet Earth? Anyone have any similar experiences?

When I went to see a cardiologist the first time he'd decided based on normal resting echos that I was just mentally ill and there was nothing wrong with my heart. I now have concrete evidence that this is not true and I do have a heart condition. Not sure if going back to him will be useful. Has anyone else been in a similar situation and did their attitude toward you change?

I have been told by two PTs that I have kyphoscoliosis and I had an unrelated test done that suggests my stroke volume (amount of blood the heart beats with each beat) may be impaired and I do wonder if this is to do with the kyphosis? Not really sure how to address this within the NHS, every time I brought up the spine deformity before they treated it like I was complaining about lumbago and gave me stretches and told me to take OTC painkillers, so not sure they'll take this seriously either. Do I need to pay to see a spine surgeon directly?

I paid to see an NHS doctor privately, he ordered tests on the NHS, it produced significantly abnormal results, the interpretation I had was the technician's comments. I emailed the doctor who ordered the test saying I would like to discuss the results with him. He told me that if I wanted to do that it would need to be privately and that he would not offer NHS follow up. This seems dubious and immoral. Is it? Or is this allowed and acceptable practice?

After several months of trying I got them to remove the BPD diagnosis. I was in a period of acute distress when it was misdiagnosed and has repeatedly led to my physical health conditions being downplayed or outright ignored. No more. Been removed from my medical file. I will never interact with psychiatry again.

I was (mis)diagnosed with EUPD in 2023. As consequence of this all of my symptoms and even confirmed organic conditions were either assumed to be psychiatric from the outset or in the case of the diagnosis I was told 'Yes, you have this organic disease but I think the majority of your symptoms are actually psychiatric so I am not going to treat the disease and just tell you to change your attitude' as a result my condition has become a lot worse, multiple parts of my body turn purple on exertion I experience severe SOB and severe exertional multilimbed pain, I had a test recently that proved all of this had an organic basis and that I am severely physically disabled, it is still being ignored and I am suing for medical negligence. I have challenged the diagnosis of EUPD they confirmed mental stability since 2023 and that I do not meet criteria, yet the bias persists. How do you all handle this?

Hello,

I had never really had mental health issues in my life until 2022, during an acute period of distress that lasted about a year I was diagnosed with EUPD. I have not taken any SSRI or psychiatric medication in over three years. I believed and believe the EUPD diagnosis to be a misdiagnosis and and have enjoyed three years of mental stability with no mental health symptoms at all in years. To this end I asked the GP to write to the CMHT to request a second opinion so I could get this diagnosis removed from my medical files as I am seriously physically unwell (I have objective test results and specialists to back this up) and have been since 2020. These physical ailments have been unmanaged and psychiatric explanations and management favoured to the extent that test results and physical diagnoses were completely ignored, which is something I am seeking legal advice about RE medical negligence. The CMHT declined to do a reassessment but they did write a letter saying I have no EUPD symptoms, I am mentally stable and have been for three years, I require no secondary care for my mental health, that it was a historical diagnosis (they explicitly called it this) and so on, so I took this letter to the GP who still refuses to remove or even mark the EUPD diagnosis as historical, making a really dodgy comparison to diabetes to justify it staying on my medical file. I am not really sure what to do now.

I went for a private scoliosis assessment today having had scoliosis documented in my medical records since 2009 but never formally measured. I have a complex medical history including suspected neuromuscular involvement, significant exercise incapacity, and I'm currently under investigation with a specialist at a major teaching hospital.

The assessment used a LiDAR surface scanning device and a scoliometer. The LiDAR estimated a lateral curve of around 15 degrees and kyphosis in the high 60s, with a rotation of around 6 degrees. The scoliometer produced the same rotation figure despite the fact that I could only achieve about 45 degrees of forward flexion, which should have compromised the reading significantly and in my view likely underestimates the true rotation.

The assessor's interpretation was that the curve was functional and compensatory, attributable to a leg length discrepancy she observed clinically. My legs are visibly the same length. She used an iPad mid-consultation and had me stand on a step to demonstrate that changing my posture changed the apparent arm gap, which she presented as evidence that the scoliosis was correctable. She did not engage with my disclosure of suspected neuromuscular disease despite its obvious relevance to both the interpretation of the curve and the appropriateness of any exercise programme.

The recommended treatment was stretches, weight lifting, and orthotics. This was recommended without any engagement with my documented exercise incapacity or cardiorespiratory history.

The X-rays, which I had already paid for, were described as something the assessor didn't want to do just to find out what was happening with my spine, but wanted to use to inform a treatment plan. I found this framing concerning. If her expectation is that once I have the x rays I will be paying for any treatment from her then she will be disappointed.

I will be taking the images directly to an orthopaedic spinal surgeon for independent interpretation and would encourage anyone considering private scoliosis assessment to ensure they have a clear right to their imaging data regardless of whether they commit to any treatment.

GP not really interested in doing any standing X ray or spine referral just sends me to physio. Sum total of my scoliosis experience with the NHS is them going 'Yeah your spine's rogered and it's deforming your chest wall. Maybe try phsyio and paracetamol ibuprofen' found the place mentioned in the title advertising adult scoliosis assessment for £179. Are they any good? And are the scan reports taken seriously by the NHS?

Got a CTPA scan this week that was originally requested by a consultant I’m no longer under, as I had requested a change of doctor.

Just wondering how results usually get handled in the NHS in this situation. Do they still go back to the original consultant, or get sent to whoever’s currently responsible / GP?

Also, is there anything practical I should do to make sure the result gets picked up properly? Seems like an admin nightmare where things can get lost.

I initially presented 4 years ago with severe day to day physical limitations, they diagnosed hyperPOTS then but still said they thought 'anxiety was at the root cause of my symptoms' it's worth noting no psychiatrist ever said I was psychosomatic and repeatedly described me as mentally stable. I was given no treatment for the hyperPOTS beyond a failed trial of beta blockers, so symptoms got worse, doctors ordered the wrong tests, which of course fed back into the psychiatric/functional framing of my issues when they came back normal or only mildly abnormal. Eventually they ordered the right test that proved I have severe physical limitations that have an organic cause, possible heart failure, (possibly as a consequence of the originally undertreated condition) and a possible muscle disease. Further testing is booked to characterise this further and diagnose. I cannot help but feel that maybe the EUPD diagnosis on my record significantly impacted how seriously I was taken and how my concerns were perceived I flat out had doctors tell me it was just stress even when I denied being stressed before tests had even been carried out. Even with this abnormal testing it's still being suggested by some that I am psychosomatic. This doesn't seem to be a uniquely EUPD experience based on accounts from others but wanted to know what everyone else's experiences have been with this? Given repeated assessments from psychiatrist of mental stability I am trying to get EUPD which I believe was a misdiagnosis removed from my records but it's taking a long time.