Quote:
Originally Posted by bluesfan
Thanks for this waterwillow.
It's encouraging to read that someone here has found not just a good doctor but by the sounds of it an excellent one. It's also good to hear there are a few medical professionals that are taking these obscure conditions seriously.
I have my first neurology appt. in 5 days time and I will keep your words in mind to stay positive. Not that I have high hopes - from previous experiences with the medical profession I've learned to keep my expectations low.
Thank you for sharing.
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Hi Bluesfan. Your second sentence is exactly the issue I would love to shout from the rooftops. THESE ARE NOT OBSCURE CONDITIONS 20% or 1 in every five people that attend neurology do not have a recognisable organic change (or should I say one that is they can put their finger on.
That is why I wanted awareness raised. Took years before I finally accepted a Functional diagnosis. My drunken walk down the street with neighbours constantly asking if I had Parkinsons, a stroke, MS etc was so embarrassing I stayed in. A FUNCTIONAL diagnosis is equally as relevant and gives hope as a functional condition can at times improve. Not always but is better than a condition that nothing can be done.
We just need treated as seriously as any other patient, as I say the condition is VERY REAL. Not just in your head. My group who meet with my neuropsychologist include people who
Spontaneously drop to the floor.
Have non epileptic siezures
Shake uncontrollably to the point they are dependent on a carer to wash/dress and meet all their needs. But this person has a wonderful nature and is articulate on how they feel.
Take weakness fits that can last for days and require a wheelchair during this time.
FUNCTIONAL CONDITIONS NEED TO HAVE MUCH MORE RECOGNITION AND NOT IGNORED.
Good luck for your appointment, neurologists are not all bad but they dont have all the answers either. LOL