Hi tommy
It is a joke I have seen people who are suffering so much and have been told they are able to work, when they can’t even put their own cloths on, I really just don’t understand why they don’t take time to see this is a person and not another peace of paper they have to sign or tick a box on, gets me so angry
Ps I hope you are well
It makes me angry too Raz
Take care of yourself
Tommy 
Hi Raz1 after one assessment I had no points and on the letter I received was we understand you have a disability but you can do things with your left arm for example you can lift and move empty cardboard boxes luckily my gp went berserk and wrote them a nice letter after which I got my benefits reinstated hope you are OK
Pete
Hi Pete
I am so sorry to hear that you have been treated in thei way, I just don’t understand none of choose to be in this way, all of us want to be able to work and to get on with our life’s, so why do those sitting in those offices ticking those box’s think that we choose one day to get up and deciywe don’t want to go to work and that we want to just sit at home and get that small amount of benefit from the government. I hope you retry to get the seen too again, as it’s not your choice not to work but your health is the reason why. I hope
You get a good result . Take care Raz
Hi Raz1 I had it all reinstated and since got the award that means no more assessments for pip but still have to have one for e+a allowance WHY? makes no sense good to hear from you keep in touch
Pete
Morning Pete
It’s so sad to hear that you still have to go though so much to prove that you are medical unable to work and to live with all these other problems which could be made simple easier by somebody saying you can have all the payments you are fully entitled to . Well I hope everything goes weans yes keep I. Touch too,
Enjoy your day Raz
Hello again Raz1,on the 15th of February so had an appointment with my consultant ,this time my wife came with me whilst there I asked him how he come to the conclusion I had PD he said you had tremors,I said it could be the tramadol I’ve been on for years,they can give you the tremors,then he said your father had PD,then my wife said she’d known my dad for 20 years and he never got any worse and never took any PF medications ,the consultant looked a bit puzzled then did the finger thing,which I did then I told him I’d just finished decorating my kitchen,and put flotex in my bathroom and toilet he again looked puzzled,looked at his notes then said you don’t have any tremors now,so I’m going to take you off of all your PD medications now for 3 month,up to yet I still don’t have any tremors,so maybe I’ve been wrongly diagnosed,let’s hope so, what do you think?,bye.
Hello Wag
Well it’s looks like you too have been going though so much, I now it’s so hard to find out what you may have or may not have even when the doctors we see don’t really understand or know them selfs, you see they have a tick list of symptoms which when they see us they tick off, when it comes to a few or more that’s when they start to see a diagnosis Of a illness, well PD is one of those too, but did you know not everyone who has PD gets a tremor, we may get the slowness and the memory Problems with the walking and talking and the rest of the things, so yes it’s good news that you have not yet seen the tremor happening but please also look at the other thinks, when thinks like you blinking, as people who have PD don’t blink as much as those who don’t have PD. I am no doctor but somethings yes they get it wrong but you have to try and make sure you that you too are sure of what if anything you have is or is not there. I hope this heels and please let me know. I wish you
All the luck Raz
Ok,will do,the Parkinson’s nurse phoned me the other day,I told her all about it,she said that there’s a scan that the neurologist might send me for that tell what dopamine you may have lost,My self I don’t know whether to go for it or not,has anyone else had the scan ?please let me know,bye.
Hi Wag
If you are offered the scan please take it.
It’s called a DAT scan and is very similar to a MRI except they only put your head in the scanner so no problems with feeling claustrophobic.
Also it will take up half your day.
As you have a painless injection of radiation stuff and pills to protect you from this.
Then about 3 hours later the scan itself.
Tommy
These stories paint a confusing aand sad picture of the NHS. Im from Australia. Its a bit the same. I got a PD diagnosis in 2010, one tiny tremor in one finger after a frozen shoulder. I kept working no meds. Scan found a lucuna in the exact spot to cause dopamine transit issues. But the top neuro said no. They band together. I had no real symptoms. Was an RN. Id taken out huge income protection prior, maybe intuitively Id felt something. Anyway in 2013 my wife and I decided that as my something was a bit worse and I have this label they wont budge on, well take them (the man) for all we can. That was worth a house. Do I have PD? We dont think so. Im on a pension though
Hello,thanks for the info,now I’ve got some idea how it goes I will go if I’m offered it bye .
Hi Wag
Yes I have had that scan and I can say it is worth you going for it as this way you will find out something rather than nothing, I too am having the scan redone as the first on way negative , so you seee in one way it’s great to have the scan but you have to be ready that for what ever reason it comes back clear than you may (a big may ) have to repeat the scan again, well all the best and please keep us posted
Regards raz
Thanks Raz,when I see my doctor in August I will tell him I want the scan ,that’s if he offers me the chance to go for one ,good luck to you also with your next scan,hope that one comes back clear too,bye for now.
Hello Hello again Reah,I had my day scan and the results were ,No sign of Parkinson’s,but the consultant said it shown that I was on the low side of being normal,to what I said then she offered me an appointment in 1 years time ,but I have to see her on 06,08,19,if I’m not happy to what they say,I think I’ll see someone about how the Co-beneldopar has left me,I’m only half the man I was before I went on it,my nerves are causing me pain like arthritis,I keep stretching my neck like I’m shoving my head through the neck of a tight polo neck jumper,even my wife says I’m not the same,I don’t think it’s right now they damaged me ,saying I had Parkinson’s when all along I didn’t,what do you reckon?
Hi @Wag,
I can understand why you feel this way and I’m so sorry that you were misdiagnosed, especially as you’ve had a bad experience with the medication you were given.
My advice to you would be to contact our helpline for their support on this as they’d be able to give you specific advice on what you can do. Please give us a call on 0808 800 0303.
Best wishes,
Reah
Hello again Rhea,yesterday I had an appointment with a consultant who I’ve seen for the last 3 times since I came off of my PD meds last February,she gave me the results of the DATT scan I had on 12,07, the results were no signs of of,but,BIG BUT ,that I’m on the low side of being normal,that meaning ,I may develope PD in a year or so,but it’s only a maybe,do you know anything about DATT scans to enlighten me ,as Dr removed for confidentiality ,couldn’t because queen’s Medical Centre in Nottingham didn’t send her any picture so she could really explain,but I asked her if on my nextPD appointment I could see Dr removed for confidentiality ,who gave me the Co-beneldopar that caused all of the problems I had,and still having,regarding the pain in my back and legs,I now know it’s not Arthritis or anything to do with my joints,it’s my nerves talking to me ,any information would be greatful ,bye for now.
Hi @Wag,
Although specialists may suggest you have a scan to help make a diagnosis, scans alone can’t make a definite diagnosis of Parkinson’s, so they are not commonly used. With that being said, we have detailed information on the different forms of scans via our website here - https://www.parkinsons.org.uk/information-and-support/how-parkinsons-diagnosed.
Regarding your appointment yesterday, I think you’d be best speaking to one of our advisers as they are more qualified to give you the right support on this.
Best wishes,
Reah
Hello, I have just been looking through some previous posts and came across yours back in February. Hope you are keeping well. My saga goes on and on…
I have several issues now and have been helped by Reah. I know have a drooping eye lid which the Neurologist says is PD related which I now find out it is - I look on the leaflet that comes with my meds and there it is - I have other bits and bobs which again are stated as a side affect of the medication on the leaflet. Quite scary isn’t it?
I relied on the Parkinson Nurse but I emailed her about a month ago and have still not had a response and you will never guess, I saw the Neurologist last month and hasn’t made an appointment for me to see him again …………… I thought I would get a follow up letter but only got a copy of the letter he sent to my doctor - increasing the strength of my medication. Don’t you just love it. I am getting cross now and will start fighting back which I should have done earlier.
Will keep you updated - promise - well that is if I get some answers. Thank you once more for your concern.
Hello again Dean,now I know I’ve been misdignosed,I had an appointment with the head of of at my local hospital and he confirmed it,but he said that I’m at the lower end of the normal range ,that’s what the datt scan shown,so I asked him what it meant,he said that part of my brain had died,so I quizzed him on how the Co-beneldopar had made me feel,and I wasn’t at all pleased,so he went through all of the protocol on how I got to being on the dreaded tablet,he apologised and said that with part of my brain dying,I was at risk of getting or in a few years time,so for now I’m no longer needing any help from the Parkinson’s people,I take no pd meds at all,and haven’t since February ,bye for now,I’ve been discharged for the pd clinic until I may need them again,all the best,bye.
