Hi, my symptoms started summer of 2010. I had a constant tremor in my right hand which quickly escalated to whole body jerks and spasms within a few months. I had suffered with a constant headache for a number of years, and had regular migraines. My GP referred me to a neurologist who I saw for a couple of years, and I had many tests, following a meeting with a number of neurologists, the consensus of opinion was that I had functional movement disorder, I was told I would be better within a year.
I was directed to a website and was referred to a psychologist. I saw my psychologist for 2 years until NHS funding for my treatment meant that it had to stop July this year, I felt no further forward.
I have various symptoms including problems with memory and concentration, full body jerks, spasms, intolerance to certain noise frequencies which can induce pseudo fits, difficulty walking, speech problems, chronic daily headache, migraines, problems with tolerating noise, balance problems, overwhelming fatigue resulting in me falling asleep during the day, irregular sleep pattern. At times I feel as if I have a charge of electricity running through my body, usually culminating in massive, frequent jerks which tend to lead on to a fit. Within the past few months I have developed paralysis following periods of jerking, this is new and a worry to me.
My GP and neurologist advised me to hand in my driving licence almost immediately, so I have been unable to drive for 5 years. I had to give up work last year, having worked for the same employer for 30 years as my symptoms were very severe for a number of months resulting in a warning for my sickness, the stress of that situation, and my inability to see any improvement in my condition, prompted me to apply for and accept a redundancy package.
I can go for a week or two and my symptoms seem quite mild, but I can go for weeks with quite severe problems. At the moment I am experiencing severe symptoms with very little respite but can find no explanation for this. I have tried to work out my triggers and believe I am worse during warm weather, also at certain times of the month. Noise is a huge problem for me, and severely restricts my freedom. I also expect 'payback' if I have been out socialising, or even after shopping trips.
I realise that I have provided an awful lot of information about myself and I hope this is acceptable. I believe that I can no longer 'go it alone' and need support, hence the teason for joining your group. I do take a number of medications to help with pain, muscle relaxants, vitamin D deficiency. I was also diagnosed with sleep apnoea last December and use a CPAP machine. I have also recently had an arthroscopy to tidy up a torn cartilage, which I believe was caused during a particularly lengthy 'pseudo fit' whilst still at work last year, I was wedged under my desk and my left leg was twisted underneath me, I realised that I was unable to move my leg as I regained awareness of my situation. Paramedics had been called due to the length of the episode however I was able to persuade them not to take me to hospital as I knew that I would be discharged without any intervention and didn't want to waste anyone else's time.
I would really appreciate any advice, particularly on my recent paralysis. I don't bother my GP but wondered whether I should be keeping her informed of developments, or even seeking her advice about the paralysis, and my present 'out of control' state?
So sorry to have written so much but I feel that I've finally got it off my chest and you all know what I'm talking about.
Thanks so much xxx