hello everyone, i was diagnosed last year and have been on the medication and just got it all so that my body is going and is able to do Simple things like the cooking now.bit I went to my last hospital appointment and there I For our that my doctor had left and I New one was appointed to me. Well when I went in she told me she will be taking over all my care now, than she went one to Say she what’s to Do a short re examination. So I said yes. She asked me to walk though a hall way, did the spiral drawing test and asked me to move and bend my body, follow a her finger round the room. Than she asked about why I was diagnosed ? Why was the reason I was saw by my last doctor and many many questions more followed. Than she turn. Round to me and said I don’t think you have PD. I burst out crying as I was in so much pain anyway, than this doctor having not known me telling me how I am Not with the illness I have been treated for for the last year is wrong. My other half asked her why she thought that and she said I am moving, talking and doing well. So I replied yes I have been taking medication and that it the reason why, she went on to say your deta scan came back negative, but we said if you have been taking the medication and than go for the scan then may be that’s why the scan showed those results. But she said no, it doesn’t work like that. Than she followed on to say that from my next appointment she will start reducing my medication. Well that was it I am waiting for the next appointment. But really really angry, up set and don’t not really what to think or say, could she be right?? On the other hand the medication has helped me so much and when o miss it I can notice the body slowing down and paining and my mind not working well at all. So the I wanted your help am I feeling this as I don’t know what to think now. If it’s not PD than what is it? As I clearly do Have something wrong with me , but don’t know again I am questioning everything once again. I feel lost again
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Contact a Solicitor about getting misdiagnosed.
I know this will be of no comfort to you.
But nearly 3 years ago my GP suspected I had pd and referred me to a neurologist who gave me a report that I had pd on one side and clonus on the other .
So I was prescribed co- levadopa and sinamet and told to increase the dose over six months.
When I returned and said I noticed no difference in the symptoms which are a severe right leg tremor and a left hand that cannot close.
I was told to come off the pd medication immediately and sent for a datscan which turned out to clear.
So I was told to increase anti depressants and a drug called clonazepam was also increased 12 fold over the next 6 months .
I asked at that point what is my diagnosis only to be told " I don’t know "
The next visit I was told to stop clonazepam completely which caused withdrawal symptoms because it’s very addictive .
He then decided I have FND and asked another neurologist to look at me his opinion is the tremor merely looks like FND given the clear scan but by now my two hands are unable to close and he said there’s no sign of me being clinically depressed which does not fit with the FND diagnosis so like you I’m back to the start except the second neurologist wants to see me in three months.
So I can understand your position it’s all very frustrating as we can’t write I don’t know on a DWP form.
I find myself agreeing with you only because I do not have faith in NHS trusts .
This may be a bit long but on the bright side it may put you to sleep LOL.
In 2005 I had a lump on my arm which my GP wanted to leave.
I refused and was referred to a consultant who diagnosed a calcium heamatoma and arranged to take it off in 6 months.
I show up for the procedure only to be told that it wasn’t what he thought it was.
I was sent to another consultant who asked me to go have an X ray and bring him back the pictures.
He then put them on the wall and said angrily if that was calcium it would be white and that’s all your previous consultant had to do.
Anyway he sent me for a biopsy and his secretary called me two days later stating I must come in now as it is serious.
Which is what the doctor taking the biopsy said and my wife was with me.
He said if this is what he thinks it is and it has spread there will be only palliative care available.
Anyway I was scanned and it hadn’t spread so I had an operation the following day.
13 years down the line the records have been changed to a benign lump.
But I still have the operation permission paper I signed which states excise and remove sarcoma which they now deny I had.
I’m not a conspiracy theorists and did not blame anyone at the time stating that nobody got up that morning intending to misdiagnose anyone but it now makes me look like an idiot anytime I’m asked for my medical history and mention sarcoma and they say the computer says no even if I produce the op permission paper and now they say they don’t know why I have tremors and two hands that cannot make a fist strange eh?
Sorry wakey wakey LOL
Thank you for contacting me, you see I have been told it’s a big big may be, so this will take some time.,I don’t want the money, but to know if it is Parkinson’sr yes or not, at the end of it I want to find out what and why. I know there have been many mistakes by the nhs but people like us are only looking for those answers which we truly need.
Hi tommy wow I truly can see that it was not just me, the more important thing is that people like us need those answers, as I don’t know about you but the not knowing is the hardest thing. It’s so good that you have been able to get to see another doctor too, as it’s so
So important that we get those answer and not just been give medicine to see how we react to them . This week is not good my legs and arms are so so painful and my elbows feel like I have been hit with a bat or a bus. They have said take more pain kills which do help, but my next appointment is i. February and I just hope that this new doctor will be able to help with the answer which I need so much. You take care and keep in touch please. All the best Raz
I couldn’t agree with you more
Answers are what we require.
On my very first visit to the neurologist he stated in front of me and my wife “It would almost be better for me in a way if I had Parkinson’s”
So after his medication trial and subsequent change of mind.
Just where does he think that leaves my mental thoughts?
Also I lost my job as adaptations could not be reasonably made to accommodate my issues
And there is no box on any DWP form for the diagnosis of
“I don’t know” therefore leaving me not only confused but in financial difficulty as am unable to say I’m disabled without a definitive diagnosis.
Good luck on your journey my friend.
Wow you really have not had a good time, like you my job had to go due to Hosptail appointment and the effects of medication, and yes there is no box to say I may have this or that.
Regarding the doctors and medication you are right they have no idea who it effects us, I don’t know if I am coming or going lately, on top of that the sudden on set of sleep is getting more and more.
You won’t believe I fell asleep with my head in my plate the other day all of a sudden. I don’t know what’s happening so some days is I am so sleep but that’s all of a sudden, than I can go without sleep for weeks on end.,
Well all the best to you and true and keep your head up as difficult as it is. But do keep me up to day
All the best to you too
How are you coping
Have you managed to get your pain under control yet?
Well I wish I could say yes to your question, I just don’t now all of a sudden my body feels like all
My muscles are pushing against my bones, I have spent most of the day moving from heat pad to massager, I have spoken to the nurse so meds up
Let’s see how it goes. How are you doing?
I’m ok thanks
But your pain concerns me
Have you called the helpline if not I think you should take Reah’s advice .
It just doesn’t seem right especially the burning in your arm .
Please follow the advice and call 111 if you have to.
Hi I will call the help line now, the burning pain has gone down alittle now so that’s ok, just need to sort the rest out, thank you for listing will keep you posted
It seems to be going on too
long and just to keep increasing pain killers doesn’t look like the answer without supervision .
I mean what if you lose your balance and fall.
Or have so many you don’t recognize any changes.
Take care my friend
I spoke to the help line and awaiting a call back so let’s see, regards pain killers I know what you mean, but I will be care full, I am being careful. Thank you for responding
Good man Raz
I’m here 24/7 if you need a chat.
One for all all for one
Am sorry I have not signed in, well I went to the doctors and spoke to the help line, as much as the helpline wanted to help there was nothing they really could do, as talking over the phone. Also to get to help someone you need to be in front of them. Doctors have said that I should get my PD nurse referr me to a Physiotherapy bit someone who knows spark PD. So I have left a message for my nurse to call me back, but the pain has started to easy alittle, but one thing the help line said over the phone it sounds about like fibromyalgia, now I am thinking what if the doctors where right I don’t have PD than could it be this, I have been reading on this and it the more I read the more I can see the signs meet
It still sounds like you are in pain and that’s not right .
There must be someone to help with that !
It sounds like torture and if was happening to me I would be in A&E .
I hope you get a solution soon
I just have had enough from going to one doctor to one nurse to another doctor, ow I am getting hot flashes my cheeks are getting so hot, and red and it head pain and cold feeling too, I hope you are well
I think I understand how you feel about seeing this doctor or that nurse but by the law of averages you will find one who knows what your medical needs are .
You still sound very unwell and the only possible advice I can offer is still to dial 111and get them to take you to hospital for proper tests.
I wish I had an answer for you but I don’t!
I only know it’s not right that you should be in pain all this time.
Keep in touch my friend