“…feeling like I am being fobbed off as a hypochondriac…” Ohh man, do I know what that’s like and there’s nothing nice about it whatsoever. I too have been given more diagnosis than I can count on my fingers (and toes), TN being one of them. A neurologist ‘may’ be able to help. BUT do not and I mean DO NOT be going to the appointment with any great expectations. If you do not have an expectation you cannot be let down when they say “We can’t find anything…”
The psychological impact for many of us with rare conditions can be massive. Some doctors can be real fast in labelling an issue, that can not be defined, as a psych issue. “There’s nothing wrong, it’s all in your head” I was told. The problem for me was they were correct, when after many years of consults and being told it was all a psych issue they finally did a brain scan and came back with “Ohh look what we found…” like it was all something new. I’d been telling them for years, decades, there was an issue only to be fobbed off, then when they finally found there was a physical problem it was like some huge new discovery. I was beyond angry. And their response was ‘Ohh well don’t blame us…’ I didn’t actually label it all as PTSD but I can truly see why people would consider it to be PTSD.
But, I’m sorry to say, from my experience, not many neuro’s have any great experience nor knowledge in regard to psych health nor emotional health. Neurologists work on 90% theory ie 'What do the scans show?" “What do the blood tests show?” but very little to nothing in regard to the psychological impact of their diagnosis. Pain is VERY subjective, each individual can comprehend the same pain in a very different way. Pain cannot be measured easily, so using pain as a gauge is open to interpretation.
An example of this is a good friend of mine telling me ‘a toothache is the worst pain in the world’, I wanted to laugh. In my opinion, give me a toothache any day over the headaches I suffer through. But my friend has never had to endure such pain and if a toothache is as bad as he has had, his pain scale of 10 is a toothache. A toothache is a 5 on my scale, so how can he compare?? He can’t. And again, from my experience, neuro’s may have seen patients in severe pain, but very few have ever actually experienced such pain themselves.
This is why I recommend ‘DO NOT be going to the appointment with any great expectations’. This way at least if you get a good response, it’s a bonus. But if the response is not so great, you are not heavily disappointed. I didn’t do this initially and the disappointment was MASSIVE and I fell into an awful dark pit, so don’t be doing that. Some medicos make out they have all of the answers. I’ll let you in on a little secret… ….They don’t know it all, at all, despite their own egos making out that they do. Unfortunately many of us here know this because we too have been in the same place as you are now. So come talk to us, we know from personal experience and not some university textbook.
Merl from the Moderator Support Team