Thank you for your reply. I'm in High Wycombe. The neurologist told me that it was a specialist scan only done at 4 hospitals, the nearest being Oxford. He said I have PD but the scan would confirm what type. There was no mention of my going on medication before the scan results were in.
My GP is young and , to be honest, I don't think she has any experience of PD. I am going to try to see the doctor who picked up on my hand tremor originally.
The Parkinson's UK support worker is coming to see me next week.
What problems have you had with the service in Oxford?
The consultations are generally fine with the PD nurse - lots of advice on groups to join and suggestions of physio, etc. but nothing is ever followed up. It took over 4 months to receive a clinic letter once and that was only because I was chasing all the time as it contained a change of medication.
The consultant seems to allow a bare ten minutes for each appointment and when you only see them every year there is just too much to fit in to the conversation. It just ends up with me bombarding him with questions and new symptoms in an effort to cram everything into a small space of time
Physio has never happened, and there just doesnt seem to be any help for PD. Any help I have got is through my own research and meeting fellow sufferers. It just feels like a struggle all the time.
I asked about local groups and was told they didnt know of any, yet by asking around I found an excellent course for PD patients which included physio, relaxation, exercises and the opportunity to meet a great group of people - several of which I have remained friends with.
There just doesnt seem to be any joined up thinking or any central source who knows about local activites.
I'm looking forward to the support worker's visit. I have so many questions to ask! I hope she's more forthcoming with answers than your contact was OxfordGills.
I've been to a movement class today (found through this site). It was a pretty thorough work out and rather upsetting as it set the tremors off - more than I've had before. Still, having beaten down my anxiety, I'll keep going. It was a huge achievement for me going alone.
I know you mentioned it bettyblue, but I am agoraphobic with severe anxiety. It's been hard enough for me to get, accompanied, to the appointments I've had so far in my home town. There's no way I could travel into London. Oxford is bad enough, so I'll have to wait it out for there. Thanks for telling me though.
I am so sorry to hear there are many variations to treatment depending where you live .Like most of us it took a little while for me to be diagnosed with p.d but as soon as my neurologist saw me and asked me to perform simple tests ie.finger to thumb and watched my gait he was convinced. I was quite shocked at first and scared like I am sure most of you can sympathise .The remarkable thing is that i was prescribed sinem et and within a matter of only a few days I noticed an improvement in my symptoms which apparently is a sure sign to confirm the parkinson diagnosis .I have only recently had a dat scan but only to confirm what my consultant and I already knew .It is about 7 years now since my first symptoms started and i have seen the consultant approx every 4 months and have been visited by a support worker on a regular basis. I live in Huddersfield and realise i am very lucky to be so well supported but please don't misunderstand me I still get angry and upset that this dam disease tries to control me but it's good to know that there are people out there that know exactly how i feel so thank you
Getting panicky about the scan now. Only 2 more days to go. I'm allowed to take my meds as normal before I go, so will take a Diazepam. I'm really feeling anxious about the machine being around my head. I hope it's not noisy like an MRI scan. Has anyone had a DaT scan?
Tremors are worse due to the anxiety and I've a constant feeling of panic. Tips for calming down please anyone.
Hi I know exactly how you feel about your dat scan I was very worried too.I hope you are able to take a friend with you so you have someone to pass the time as you will be there about 3 hours. You are only in the scanner a short time and it's much better than m r I .The nurse will be very kind with you and think how good you will feel when you have got this day over with .
they can be noisy but for dx i am afraid it is a necessary evil but just picture you on a golden sandy beach with those you love ad the trees are swaying with the warm gentle breeze with the turquoise water just tickling your toes. A beautiful sunny day in somewhere you would escape to I call this my visualising therapy sends me to the Seychelles. Take deep strong breaths and let your mind wander.
Above all dont let the pd win for you and those you love.
there isnt too much too it really, a injection of dye which isn't painful at all it was the most interesting part of the day as was told too stay away from children and pregnant ladies, then several hours of waiting about, addenbrookes has a shopping mall and food area to rival most towns, the scan itself i almost fell asleep bar a loose screw inside that rolled about, not like a mri at all.
Good news. It's not Parkinson's Disease. It's Parkinsonism caused by the tablets I'm on for other things.
Stopping the tablets or changing them should allow all the symptoms to clear up. That could take up to 2 years or might only be months, they can't say. At least it's not going to get worse.
I'm so relieved and totally exhausted. I can't say thank you enough for your support. Thanks
Glad you have a Answer too move on from Maddie, My Gf is currently comming off some nasty pills which will be a long process that have effected her health beyond her own illness.
