Hi Everyone, I joined earlier today. I tried to write an introductory post then on my Kindle Fire, but hit a wrong button and lost the lot, so I'll try again.
I'm 55 years old and have been ill and unable to work since December 2005. I've had some terrible experiences with neurologist, the worst was at the UK's top neurological hospital in London, where one neurologist aggressively accused me of faking it. Things went down hill from there as I lost all trust in them. I was eventually told I had FND and told to look at the neurosymptoms.org . I was not impressed. I used to post videos about my illness on YouTube at the time, something I stopped doing a long time ago, in fact one of my videos shows up high in Google for functional neurological disorder. You may have come across it. I wasn't too happy with the diagnosis.
Last year my GP thought I should see the local neurologist because of my Parkinson-like symptoms. The local neurologist once again referred me back to The National in London. This time I saw a professor of neurology who specialises in movement disorders. He trained one of the neurologists who has contributed to the FND Hope website. This neurologist, unlike the others I'd met, was kindly and took his time with me. He decided to do a DAT scan to measure the dopamine in my brain just in case I had a atypical presentation of a Parkinson's Syndrome. The scan was done in November 2014. The fact I won't get the result until this Thursday suggests it was clear, so I know what is coming. I'll be told all of my many symptoms are functional.
I have visited the neurosymptom.org site numerous times and have read all of the articles I can find by Stone and Edwards about FND and can't help but feel that a diagnosis is a cop out. In fact I feel they are playing a semantics game in order to make the diagnosis more palatable to patients. When Jon Stone talks about the software in our brains being our "thoughts, behaviour, sensations and emotions" it sounds very much to me like he's saying it's psychiatric. But I also lack trust his website because he classes ME/CFS (myalgic encephalomyelitis/ Chronic Fatigue Syndrome) and fibromyalgia as functional, even though there's loads of evidence for the physiological basis of both conditions. There are over 5,000 medical papers that show physiological problems in ME/CFS alone. So this makes me question what he has written on the neurosymptom website.
Over the last 8 weeks I have had a remission. I won't list all of my symptoms, but I've gone from struggling to walk 20 metres and using my mobility scooter to being able to get around, to walk my dog 3 miles in the morning and 1 mile in the evening. Plus I've been able to loads of normal things I've not been able to do for a long time. My cognitive problems also went, as did the involuntary movements I have. Everything was looking so good I was hopeful I might recover. I had the odd symptom here and there, and a couple of short periods last a few hours when things weren't so good, but I was functioning normal. I was hoping I could once again get back to work and a normal life. I nearly cancelled my appointment for this Thursday at the National because I was so well it seemed pointless. However, things have started to deteriorate over the last two weeks. Although I'm still remaining as active, walking has become harder again because of my gait, my cognitive difficulties keep coming back and over the last few days I have had involuntary movements. It has been a big disappointment.
I am still trying to get my head around the whole FND thing. I am very sceptical as you can see. But I'm not totally closed to the idea. It seems to me that if it was just all about our ""thoughts, behaviour, sensations and emotions" then why on earth do so few people make full recoveries? The whole thing doesn't make any sense to me. It seems there must be some pathology there that's being missed. Perhaps to do with neuro-transmittors in the CNS which they can't measure. I'm trying to keep an open mind but
it's hard. Thursday's appointment will be interesting.