Table 2.

Problems in obtaining a diagnostic test

‘Difficult to convince medical practitioners of my symptoms especially as most were not aware of the disease Trimethylaminuria. It took me having an emotional breakdown and severe anxiety before I was reluctantly sent for a urine test.’

‘Finding a GP that believes you have the symptoms. Unfortunately, it seems likely to put you in a mental health hospital.’

‘tmau is so rare you cannot possibly have it’.

‘I experienced years of futile GP visits, being told that I don’t smell, to consider good hygiene practises, that I’m suffering from anxiety or imagining it.’

‘The dr told me what I was talking about didn’t exist.’

‘Doctors telling you basically implying that your crazy and need to see a psychiatrist.’

‘I was tested for STD. Given advice on personal hygiene, told it was all in the mind, was told they could not smell my odour, then put the fan on, opened windows and then covered nose.’

‘Symptoms not taken seriously and then multiple unnecessary diagnostic tests due to lack of awareness of the disease.’

‘When I attend my gp surgery the first time the doctor told me I was being paranoid.’

‘My GP was unaware about tmau and didn’t know what to do with me.’

‘GP said as there is no cure or treatment they can’t help me.’