Hi my name is James and I'm new to the forum.
I have been experiencing some pretty worrying symptoms for about 2-3 years and recently decided that I need to get it checked properly. these have included sometimes Severe hand + facial + neck tremors even when relaxed or laying down, Difficulty walking (hunched/ feet not responding when walking over uneven surface or curb) , Constipation, Fatigued , Night terrors and severe sweating when sleeping, Forgetting words (this is really worrying and use Google to cover conversation lapse).
My GP was really good and has put me through to a specialist in the next few weeks, but am now really nervous as they have put me on propranolol in the meantime, which doesn't completely stop the tremors apart from making them less severe and definitely hasn't helped the other symptoms. Also makes me really slow and a bit tired.
Basically I might be fine, but everyone is noticing in the last couple of months as I cant hide the symptoms and a work colleague mentioned PD and this group until I have been diagnosed properly as his mum had it...I hadn't even thought of PD until this and used to just laugh it off as "shakey Jim".
I am 30yrs since Sunday and really just looking for advise for when I see the specialist and anything really whilst I try not to sink into the darkness in now what is a waiting game.
Thanks for reading.
Hi Jamesvana,
Sorry to read your in this waiting position. All sorts goes through your mind. Some, not all, have been diagnosed after an MRI scan that detects the decrease in dopamine in the brain. It might be that the specialist suggests that. That's how I was diagnosed last may. It's very hard to get a diagnosis as everyone has different symptoms. So try not to worry until you see the specialist. The good thing is you're being helped now.
Good luck
Thank you DevineR,
Yeah, definitely hoping and glad im getting a specialist. I was wondering what tests are best to rule out etc. Just hard not to worry really, especially that the go put me on a beta and my specialist called the other day.
Sorry to read about your recent diagnosis and hope you are OK.
J
I'm not sure what tests to rule out but you could do a diary of your daily routine and when and where you're symptoms are at their worst. Sometimes writing down questions you have is good. I'm terrible at remembering what I want to ask. Also these specialists do this all the time so it's seems all normal to them. They can be so quick. They forget you're nervous.
I'm sure someone else with more of an idea will post re: tests.
I'm getting on with life day to day. I very got years of good living to do Parkinsons or not!
Hi James
gp's often prescribe propranolol as it sometimes helps with tremor although its not a drug designed for PD.
if your asking what too expect when you first visit a neuro
the neuro might start by taking notes called history taking, asking about family history , job , when you first noticed or why and symptoms you have ect, the neuro might ask you to do simple hand or arm or finger movements or walking or turning, reaching.
if further tests are suggested it might be a mri scan or nerve conduction tests, a mri might often show nothing at all but its all part of the process towards a eventual answer.
it can sometimes be a bit of a wait for tests and answers.
try to write everything down however small you consider it too be, even your hand writing helps.
Hi Sea Angler,
Thank you for your support and what to expect and apologies for my delay in responding as I have now finally seen the Neuro. Just an update that they are concerned and said that I have a resting tremor and have put me forward for an MRI and DAT scan, which I should be having in about 2 weeks - 6 weeks time.
Apologies if I seemed worried as at that time I had been ignoring my symptoms and got to a breaking point as they were getting worse.
Hopefully these scans will help answer what is happening.
Best wishes,
Jim
Hi DevineR,
Thank you for your support and what to expect and apologies for my delay in responding as I have now finally seen the Neuro. Just an update that they are concerned and said that I have a resting tremor and have put me forward for an MRI and DAT scan, which I should be having in about 2 weeks - 6 weeks time.
Apologies if I seemed worried as at that time I had been ignoring my symptoms and got to a breaking point as they were getting worse.
Hopefully these scans will help answer what is happening.
Best wishes,
Jim
No worries Jim Glad its moving forward for you to an eventual answer
Hi Jamesvana,
It's good you've finally seen the neurologist. Now you've got an MRI planned at least you may feel looked after.
It's horrible that things take so long. We're all so different and diagnosis can be arrived at differently. It's OK to feel worried and anxious. We've all been there.
Good luck and let us know how it goes.
Hello jamesvana, also I wish you all the best. I had the DatScan too. I hope you get your answers soon.
Sue
Hi jamesvana
I am experiencing pd symptoms and have been since sept 2015. I had a dat scan in april and have just had results via letter from consultant indicating loss of dopermine on left side basal ganglia which he says he will discuss with me on nxt app. That was nearly a month ago and im still waiting for an app it seems to take ages but at least youre getting somewhere with the scans. Hope all goes well
