Finally, I get to see a neurologist for the first time in 6 years.

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I asked my GP if I could be referred to neurology again, after a 5 year hiatus. Note, I said 5 year… that was almost 1 year ago. So imagine my surprise when the letter dropped through the letter box confirming an appointment for the 26th of September…

I’m a bit apprehensive about it. My previous experience with neurologists hasn’t been very good. They don’t seem to be interested in my neurological symptoms unless they are of the painless palsy type. They don’t appreciate that with HNPP body parts drop in and out of numbness and loss of power like leaves falling off a tree. OK, so they don’t last long, maybe a few days at the worst, but the constant change does cause quite considerable problems. Then there are the niggling problems that continue almost without end, in and out of palsy time and time again. It’s no joke I can tell you.

Another problem is that it is so widespread, not just a foot or two or and hand or two, but patches all over, from head to toe. It becomes too much to talk about, and their eyes glaze over, then they snort with disbelief. I wish I had an HNPP ray gun, give them a taste for a few days.

I ought to get in touch with the south west neuromuscular team, and run over a few things with them, perhaps they might be able to help me prepare for the event.

The good thing is, that it isn’t at Frenchay Hospital. I detest that place with gusto. I spent 8 weeks working there as a student nurse on secondment from the psych hospital. I was only there a week or so when I woke up with obvious hearing loss and tinnitus, I felt dreadful for months, dizzy, face pain, headache… no one knew what it was, and trying to work in a hospital in that  state was an absolute nightmare, I hated every damn miserable second of it. The ward I worked on is now part of the neuroscience department. Going back there is like the worst flashback imaginable…. thank goodness I don’t have to go there again…

Too much.. time to chill a bit…

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One response »

  1. Hi Jon…. congratulations on your forthcoming appt! With any luck he/she will be as helpful as mine at Walton…..eeeerrrmmm HNPP, numbness? when was last shock tests? we’ll have some more bloods and see you in what 12-18 months….can’t do much for the ‘PAIN'(HAHA)’ that you are getting, your GP is keeping you off the codeine and paracetemol/tramadol etc as they are of no substance, ok Bye!!!
    Hopefully you will have more luck, plenty to catch up on….6 years, best wishes and thank you for your support, just written to CMT USA & UK for an update so fingers crossed, Alison(StHelens,UK)

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