Need advice

Taking Control Ways to take control
1

I need advice!
Having been diagnosed July 2014 I have found it really hard to come to terms with the future. I have settled down now but always have a little fear in the back of my mind about what will happen in years to come. 
  In  December last year I was struggling with pains in my joints, fatigue and my resting tremor had returned, so I went to see a doctor who was so useless. Her words were” I don't know anything about Parkinson’s, best you go and see a councillor”. I asked to be referred to my consultant, then I was told he had changed to another. I went to see him a week later  and I was in there 4 and  a half min and I felt tied and unsure when I came out. 4 weeks later I have received a letter saying
Diagnosis: Restless leg syndrome previously diagnosed a Parkinson’s disease( possibly well controlled ) on Rotigotine
Does this mean I haven’t got Parkinson’s and I just have restless legs or are these people just playing with my mind! Do I speak to the doctor or my consultant again! I'm confused. 

2

Sounds like your GP needs a retraining session!

Dr's often say things like 'previously diagnosed Parkinson's' to keep the notes up to date.

I would read that diagnosis note as adding Restless Leg syndrome to your PD diagnosis. (But I am not a Dr!!)

I'd ask for a Parkinson's Nurse referral from your GP (but perhaps from another Dr in the practice!!) - appointments with a PD Nurse are usually longer, giving time to discuss things...(4 1/2 minutes with your consultant sounds very short!) But you would have to wait for that...so you could call the PUK Helpline and ask them for advice.

Keld

 

 

3

Thanks Keld, 

I will get in touch with her tomorrow, I've never met her before but was given her number when diagnosed. I'm just a little confused at the moment, and this all makes my symptoms worse. 

Thanks again 

chop chop

 

4

Hi Chop Chop....I agree with Keld...your GP needs re training and soon. As if it is not enough to feel poorly and need answers you also need support from people who specialise in Parkinsons eg a PD Nurse on the other end of a phone when you need her/him. I realise this is nor always the case in some areas of the country and when i was first DX the consultant i was under just told me to ring his secretary if i needed help...well whenever i tried i did not get any response. Eventually by chance i got talking to a retired general nurse who suggested i change to another Consultant who has 3 Neurology nurses in my area West Sussex. I have never looked back, it was the best thing for me. I know that if i feel poorly i will get the  support either straight away or within 24 hours of calling them. They give me time and reasurrance which is so important isn't it?  I am lucky that i have a marvellous family GP who referred me without question. Your health is of the utmost importance and stress is the last thing you need and if you are not getting the help and understanding that you are entitled to then find a GP that will, also as Keld mentioned the PUK helpline are invaluable so give them a ring ay?

I wish you all the best and would be interested to know how you get on....also keeeeeeeeeeep posting as we are a friendly bunch who understand how you are feeling and chatting things over can help i have found. 

luv Dolly x

5

Hi Chop Chop,

I'm so sorry to hear you are being messed about and confused. I think the medical profession forget sometimes, what a huge impact their words can have on people and they need to explain things more carefully and compassionately.

I would write down your worries and email your consultant. I find this is the best way to get a response to my questions. He should either reply, or arrange to see you again. Four and a half minutes is a ridiculously short time for an appointment......you need 20mins. at least.

Next time you go to see your doctor, neurologist or PD nurse, why not take someone with you. And make a list, beforehand, of questions to ask.

All the best and I hope you get some satisfactory answers.

Twinks.

 

 

 

6

Thank you Dolly and Twinks, I will take all your advice, I will get in touch with my nurse and I will email all my worries to my consultant, that way I will feel I'm in control and this will clear my mind. I will keep you informed soon. Thanks again 

chop chop

7

 

i hope your nurse is as good a experience as mine has been, i do always get more time with her 20 mins -30 mins or longer, appointments have always been indepth as she said they would be and on time, certainly more gets done.

8

Well I took all your advice and went to see another doctor today, a doctor that know me years ago. She was lovely and she went through all my notes and contacted the consultant in question. He admitted he had not read the notes from Newcastle and had made a mistake. My doctor sat with me and went all through my notes and then confirmed the diagnosis was still Parkinson's. There were clear indication of my symptoms today as when I'm stressed my symptoms are worse. And between this useless consultant and my lovely new/old doctor I have had my Meds increased and a big worry sorted. Thanks everyone, hopefully things will settle down soon. 

Chop chop

9

Hi ChopChop

just read your story and sorry to hear of your problems with GP and getting stressed which does make things worse but sounds like you are in good hands now. I always bypass my GP when it is my PD straight to my PD nurse and team who are fabulous I must say at the Royal Hallamshire. Keep yer chin up and keep smiling keep laughing.  Andrew PD 10 years now. : )

10

Thanks Mally, I'm feeling a little better, and I'm trying to get back to life. I'm getting there. 

Chop chop