Maybe misdiagnosis


Hi Raz1 hope you don’t mind but over the course of the last year I have come to count Tommy as a really good friend he asked me to read your posts ashe his so worried about you can I ask how you were diagnosed did you have a dat scan of your brain? if not you need to get referred for 1 also you can see for yourself that you are not Welland even admit it I would urge you to seek help if you don’t want to see a doctor or nurse then please ring the helpline where you will get sound advice I know what you mean about doctors and nurses as I looked after my father who had pd and now it, s my turn
Pete if you think I can help like Tommy I, m only to willing to


Morning tommy

I am glad to here that you are getting worried, but I don’t want you to get to peruse, up date I have spoken to a NHS last night and they have got my Hosptail appointment naught forward to this week Tuesday, and as I said about the pains I have been asked to take one more med, with a hot water bottle, which I have done alittle more, it my pain in the arms has gone down alittle, and don’t feel that tenssesed . So in a way good news so please don’t worry too much. And thank you for all your support please. :blush: I hope you are keeping well too .?


Good morning Peter

It’s so so nice to hear that the are people here to help, listen to us. I didn’t want to get Tommy so worried, but I have taken advics and mamged to push to get my appointment push forward and hopefully they can give me more clear answers to what is work with, regards the scan I was diagnosed Last year after having Isaacs syndrome for years, than as soon as they started me on the medication first with the patches but my skim couldn’t take it, so started the tables, and was doing well, than the last 5 months not sure what has changed but my body has started to hurt a lot more, with no able to do anything so days at all, with a hand full of sleeping too much or for days on end without sleep at all. So in they did the data scan, that came negative, I had my Hosptail appointment at hospital and my doctor said it happens sometimes, and the fact that I was responding to the medication in a good way, so he said he can still say I had PD, than the next Hosptail I went only to find out that my doctor had left, and a new one will take over my folder. That’s when she told me I don’t have PD and said at your next appointment I will reduce your meds, me and my husband told her why and what the last year has been like, she just said we will have to see. So as I have moved homes and couldn’t get to the same Hosptail I asked to change doctors which she really didn’t want, and I got my PD nurse to ask to do that’s dont know. So now I am in this pain and my PD nursery and help lines they have got the appointment broght you see it’s this what I am going though, oh on top of this a few people who I know have fibromyalgia, and now telling them of the way I feel apart from the sleep thing the pain level sort of sound like me on some days, I know that sometimes when you are looking for answer everything fits and somethings nothing does .so you see I want to get of the unknown bus now, thank you for taking time out for me too

All the best Raz


Good morning Raz 1
I’m so glad you called the NHS last night and managed to get your appointment brought forward (good news indeed)
No-one should suffer as much as you have and be left to think about a change in diagnosis on your own it’s just too frustrating.
Raz please don’t think I worry too much as you are now a member of our club and in here we care for each other .
That is just what we do!
I hope you get what you need from your new appointment
Tommy :pill::pill:


Hi Raz1 glad you have sorted out an appointment I have learnt from dealing with my late father’s health issues that if you don’t speak out or stand up for yourself you get pushed aside with the result now if I, m not happy with treatment then I make it known as Tommy said you can contact us anytime you will usually find us on insomnia thread keep us posted on how your appointment goes good luck with your appointment


Hi tommy thank you so much, glad to be part of this club as I know people understand and take care too

Kind regards Raz


Hi Pete

Thank you all for your kindness and I will keep you posted on the appointment too, I will contact you if I need any help Again, please take care too

Kind regards Raz


Hello Raz,on 31 December I had a n appointment with my PD consultant,and he said to me that he finds it really hard timers I have PD,then he put me on Melatonin for my lucid dreams and restless legs at night,(what a load of for about the Melatonin) they made me worse,then on 10/01/2019 I made an appointment to have a word with my PD nurse,she said first don’t look or walk and talk like a person with PD so I’m thinking like I’ve been wrongly diagnosed,what do you think?,bye.


Hi Wag

Well I am sorry that you are having these problems? But from what you have said so fare I think that the doctors and nurse should be seeing you so more, as if your nurse says that she see no signs of PD too. But one the other side I know a person just like that no sighs what so ever, she walks and talks , and shows no sign of any discomfort at all. But she has had PD from the aga of 30, so you see some times when someone says they can’t see it there may be a really reason why. In your case do you have any other symptoms? I still have not had my appoint to talk about what I have. But I. Must say I feel my body slowing down , more pains and most of all having other tests from my hands are arms . Please let me know how you get on.