I want to share my story of mis-diagnosis simply because it is a warning to not get TOO scared of the so called professionals at the beginning of diagnosis.
I live in the UK. About 10 years ago I found a large lump in my neck (approx the size of a large marble). I went to my GP who scared me by making an immediate emergency referral to the Ear, Nose & Throat clinic
for the next day. At the hospital, I was asked if I minded the student docs observing. This transpired to be a situation of total disregard for myself. I was asked to sit on the bed, naked from the waist up, whilst the student docs (about 10-12 of them) were asked to walk around me and make a suggested diagnoses. Stabbing in the dark, they were making ridiculous suggestions such as curvature of the spine, anaemia, breast cancer, the lot. Finally one of them spotted the lump and their suggestions then focussed on various cancers, lymphatic ailments, lupus, Hodgkins etc. This was very distressing for me. Then the Consultant checked me head to foot for bites / cuts etc and noted more swollen lymph nodes along the whole right side of my body. He told me the lumps were probably my lymph nodes trying to deal with a serious infection or cancer in my body. After asking me to fill out a massive questionnaire such as had I been injecting drugs / had I been swimming in stagnant water etc, taking bloods and urine samples, he arranged a biopsy.
I underwent a general anaesthetic to have plastic surgery to remove the biggest lump from my neck. The biopsy didn't show any signs of cancerous cells, so the lumps weren't as a result of a cancer in my body. At this point I was informed that I must have Hodgkins disease. I was told that I would need chemo & radiation treatment and that I would need outpatient treatments with a carer to move into my house with me. I had a big bandage on my neck and since the diagnosis was made so firmly and absolutely, told my friends and family and went through the whole bizarre thing of being told how 'brave' I was etc and the surreal experience of being avoided or conversely people I didn't know approaching me to do sad faces and say how sorry they were to hear the news etc. My boyfriend also arranged to move in with me and take care of me which I was very unsure about. However, after doing further tests prior to treatment, I was suddenly told Hodgkins had been ruled out and that the only outstanding diagnosis was HIV. In those days, a consent form had to be signed for HIV tests and it took a week to come back. So, I had to tell my boyf that suddenly I wasn't having chemo but probably had HIV. As you can imagine, this whole saga eventually destroyed our relationship.
A week later, I was telephoned asking to come to the hospital for my results. I assumed the worst, naturally. I was put in a queue outside a consulting room. When my name was called, I entered the room which had two Consultants whom I'd never seen before. The lady told me the HIV test had come out negative and that I could leave. I was absolutely furious and all the emotions came out, I started screaming and shouting at them. They told me it would have been ethically wrong of them to not inform me that was the suspected diagnosis. I asked them about all the other wrong diagnoses - Hodgkins / cancer etc - and they said they couldn't comment because they didn't know about that. I asked them what was wrong with my lymph nodes and they said they could only assume that it was due to a high level of toxoplasmosis in my blood and my immune system must be quite low. They said there was no treatment necessary and my body would continue to fight it by itself. I was so furious I was nearly insane from the way I'd been treated and they were confused because I was supposed to be 'happy' that I didn't have HIV.
Can you imagine what my friends, family, colleagues etc thought about this unbelievable story. It just made me look like I was a compulsive liar or hyperchondriac or drama queen.
Also, even worse, during the last 10 years I have been suffering from increasingly worsening depression and personality changes. Now, my recent research has found sites that say untreated high levels of toxoplasma in the blood can trigger permanent changes to the brain and affect mood / personality. I just can't trust any doctors or so called professionals any more there doesn't seem to be any way of validating anything they say. I have already had so many other problems and seen members of my family go through ***l with the UK NHS I just despair.
All I can say is, don't despair if given a terrible diagnosis, get a second opinion. Also, don't tell anyone except very close people until AFTER you are absolutely certain of the diagnosis, the treatment and the prognosis is totally correct.:(
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