"Feeling ignored and without options"
About: Box Hill Hospital Box Hill Hospital Box Hill 3128
Posted by Rare disease survivor (as ),
I attended an outpatient appointment with a neurologist, as a follow-up to an appointment with another neurologist (hence, broken continuity of care). I informed them that since my last appointment, I had been diagnosed with a serious, rare condition that likely explained the symptoms that were being investigated.
I asked if we could talk about the other possible neurological manifestations of the condition (there are many, and they are serious). They told me that if I had any such manifestations I would be experiencing 'significant' symptoms. So I asked "What would some of those symptoms be?". They then told me that they weren't sure they wanted to tell me, and tried to leave it at that.
What an appalling thing to say. I feel that they clearly did not want to describe the symptoms, because they thought I would identify that I was experiencing them, and they would have to act on that. They made me feel like I was a waste of time and space, hysterical, and 'treatment seeking' for the sake of it, and that they needed to prevent me from identifying anything that would require action.
The rare condition I have affects almost every system and tissue type in the body. As such, I have many different symptoms, some of which are significant and disabling. I have only had my diagnosis for a short while, so I am still trying to work out which symptoms are caused by which aspects of the condition. Ironically I asked the above question to save the doctor's time, by avoiding me listing a bunch of symptoms that are irrelevant to neurology. I thought asking that question would allow us to quickly identify if I had symptoms that were relevant to a neurologist.
They did not do any of the examination components necessary to diagnose the likely issue. This doctor knew essentially nothing about my condition. I'm OK with that, because it is rare. But I do wish they had just admitted that, committed to spending some time looking into it, and then organised for me to come back and see them once they were better informed. Instead they just blocked me, gave me false reassurance without knowing about the condition, and sent me away. I now have nowhere else to go, as they were unable to identify somebody who would be better equipped to help me.