Hi, my name is Dan.
I was diagnosed with Dystonia in 2018, since then (looking back) I have had lots of other symptoms gradually getting worse over the last few years, but it’s only been the last 10 months that I went to the GP and have been going through a pretty tough time since.
I am only 39 (40 this year). I have a distinctive and now permanent tremor of my right arm/hand, jerks through my shoulders, my walking pace has slowed significantly and my gait of very short (2 years ago I was running marathons) I struggle walking round the block and get breathless easily. I am having pains in my head on the right side, twitching of my eyelid, spasms in lower back muscles and calves regularly, my speech is become worse and memory problems are also deteriorating and recently have noticed having problems in the bedroom.
My GP has been great, she has given me medications and referred to the neurologist. Before yesterday I had been in the room for a total of 10 minutes if that. But yesterday following a DatScan that was clear, he tells me I have functional neurological disorder.
Last week I went to a private neurologist who is a speacialist in movement disorders and he has asked my GP to refer me to him as he thinks there is organic problems and thinks it is more that likely a Parkinsonism and is willing to treat it that way.
My dad has Dystonia and my uncle has Parkinson’s.
I am struggling to work from home and haven’t drove for some time as I don’t feel safe my my slow movements and tremors.
My wife has been amazing throughout, and being a nurse has been fantastic at helping me throughout, but it’s it’s such a stressful time for everyone, following yesterday’s discussion was a bit of a let down, and we have no confidence in the neurologist at the hospital.
How much should I be pushing for the GP to refer me to the private consultant who has more experience in this area and has a very different opinion of my symptoms and possible diagnosis.
It’s obviously not something I want, but if it is Parkinson’s I am diagnosed I feel we can then get a plan in place and start to move forward with it. At the moment I feel the consultant at my local hospital really doesn’t care, and is not interested in getting to the bottom of my issues.
I have dragged on a bit but just wanted to get some opinions on how long this might take? am I doing the right thing trying a different consultant with more experience in these specific issues? I am only young and this is having such a big impact on my life I just want to know what direction my life is going in for my sake, my wife, my kids, work etc. Thanks in advance for any replies.