Undiagnosed and rare conditions
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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. 



  • GeoffBosworth195661GeoffBosworth195661 Member Posts: 163 Pioneering
    Hello @callumchilled Welcome, as I understand you have a complex of issues that firstly it is frustrating to not knowing with the undiagnosed conditions. You do seem to have a lot going on and with Neurology it also is a very complex to know what the brain can do. Neurologists do not have all the answers with the brain but slowly they are getting closer each time. When you have certain conditions and have no answers then you have two options one except his views that no name can be given. Because it is complex that throw a box of 500 piece jigsaw and the question to be asked which will be the last piece to complete the wider picture before you start the picture. Neurologists as I said are still learning like any other specialists in any area there is more to be improved. Now second answer you can ask for a referral to see a other neurologist you have your rights. And again you could end up with the same answers. Calum try not get frustrated if they had the answer they would have solved it. But while you have the complex the researchers is an ongoing thing that the public don't see. Any type of bang as you get older can have much more effects with the human body. Callum you have so many medication until the medication gets used to your system you will feel like you do. Neurologist already has explained and try not get worked up as that does not help, and most of your issues one by one will have answers in turn. You will be surprised with the number of undiagnosed in this country alone going exactly with cures that DRs can not do. You are special and it is not the end of the world life is very valuable and we have to make the most of our capable lives. Take care Callum and I hope what I have put makes sense and understanding.      
  • callumchilledcallumchilled Member Posts: 14 Courageous
    Hi Geoff,

    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.

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