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No diagnosis is more common than you think
I’ve had my condition for over 4 years now, and I’ve stumped the neurologists. They have told me it is quite common that someone can present with a variety of neurological symptoms, though they cannot compartmentalise everything by giving it a specific name.
I found this very frustrating to start with, but over time, I’ve come to just accept it and live with it.
I have severe problems with balance and awareness, confusion, anxiety, and memory problems, cognitive difficulties, migraines that present as though I’m having a stroke, and weakness on my right side. I need to use a walking stick and wheelchair as I fall over a lot.
All of this started after I banged my head rather badly. I’ve been scanned and poked and prodded and pricked and drugged up. There are 11 different items on my repeat prescription now, and someone has to do my pills for me as I get confused about them and have overdosed on them in the past as I got so muddled with them.
My neurologist said, that although my symptoms are very real, the brain is a very complex organ that they don’t understand fully yet, so they put me down as an ‘undiagnosed neurological condition’.
So don’t feel alone. It’s not the end of the world. You get used to it. You’re special.
Callum
I found this very frustrating to start with, but over time, I’ve come to just accept it and live with it.
I have severe problems with balance and awareness, confusion, anxiety, and memory problems, cognitive difficulties, migraines that present as though I’m having a stroke, and weakness on my right side. I need to use a walking stick and wheelchair as I fall over a lot.
All of this started after I banged my head rather badly. I’ve been scanned and poked and prodded and pricked and drugged up. There are 11 different items on my repeat prescription now, and someone has to do my pills for me as I get confused about them and have overdosed on them in the past as I got so muddled with them.
My neurologist said, that although my symptoms are very real, the brain is a very complex organ that they don’t understand fully yet, so they put me down as an ‘undiagnosed neurological condition’.
So don’t feel alone. It’s not the end of the world. You get used to it. You’re special.
Callum
Replies
Thanks for your in-depth reply. I like the jigsaw analogy, it fits really well. My neurologist told me how surprising I’d find how many people they can’t give a diagnosis to, and she explained it quite well. I’m quite happy with her undiagnosed neurological condition diagnosis, and after some extended clinical health psychology sessions, am quite at ease with that’s how am I now.
OK, I still get frustrated with myself sometimes, but I’ve been told that that is OK too, and to be expected. The hard thing is not letting it get to me.
I think one main problem in the NHS, is that they separate physical and mental health into two completely separate boxes. With me, everything is so interlinked. My physical problems fuel my psychological problems, and my psychological problems fuel my physical problems. They are all interconnected. For example, feeling dizzy all the time is partly due to a damaged vestibular, problems with my brain interpreting images and giving me double vision, medication, and an amygdala that triggers off far too quickly. Each by themselves, would be copeable with, but together, they soon add up to me falling over a lot.
The important thing, is not to beat myself up about it, or get frustrated. Easier said than done.
Callum