Nearly diagnosed! Sorry this might be long

I have been having appointments with neurology and cardiology for well over a year. Parkinson’s has been mentioned on several occasions . I had a dat scan and in the meantime had an appointment with my GP to discuss my failing memory and I am worried about why that might be. The GP sent me for an MRI and then called me in for the results and also checked my cognitive abilities. I told her I had had a dat scan a week ago and that PD was being mentioned, to the point where it seemed to be taken as fact that was what it was. My GP wasn’t aware of any of this and looked on her link to my local hospital and confirmed that the dat scan showed that it was indeed Parkinson’s. Whilst having the dat scan the nuclear medicine staff also mentioned PD twice and asked if I would be willing to assist them in trying to raise funds for new scanning equipment which I agreed to. I needed to have PD to be part of this and they seemed to think I had.

Anyway, my GP was very kind and explained that PD wasn’t a life sentence and said that I should go away and think about it all as it was a big thing to take in and she would make a further appointment in a weeks time when the neurology report would have been done. When I turned up for that appointment she was a bit uncomfortable because the report had not arrived and I think she felt awkward for having told me it was PD when the hospital had not officially confirmed it.

I have now had a letter from the hospital inviting me for nerve conduction studies next week. My GP doesn’t know about that appointment yet. She texted me today to say she had been chasing my report and neurology have told her that my appointment for results is to be in Jan 2022! I therefore know it’s PD, but haven’t had official confirmation and cannot have any support or medication. That will be at least 18 months since this all started, but I have been having falls and memory problems much longer than that. I badly broke my arm in a fall a year ago and fell in my garden last week. I have had many falls over the last few years despite being a fit and lively 71 year old. We walk our dogs every day for a minimum of an hour.

I would be very interested in your opinions and whether you have experienced similar situations. What things would you suggest with regard to exercise and diet that would help me remain well whilst I wait for the NHS to tell me what’s going on? I’m wondering whether I could see someone privately, but I suspect we’re too far down the road for that.

I had got my head round it all, but having the 2022 appointment turn up has knocked me back a bit, despite being a usually very positive person. I forgot to mention that I already have lupus so I’m not sure how the two diseases will get on together, or I suppose there is the possibility that it’s always been PD and I’ve been medicated for the wrong thing??

Thank you so much for reading my tale of woe. Sylvia x

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Hello Sylvia

That’s frustrating. I started on PD meds a few weeks ago and it has been very effective. I think if I had to wait till next year I’d definitely seek a private consultation.

Meanwhile - I’ve learned to do hand exercises (I found on YouTube) because I was losing the use of my hands. I’ve been eating much more fibre - fruit and veg. And I’ve been doing some weigh-lifting exercises. I take a high strength Vitamin D pill every morning, and a Vitamin B ‘complex’ pill every evening.

I think these things would have been helpful if I hadn’t started on Madopar.

Hi Lemon and thank you for responding.

Looking for exercises on uTube is a great idea. I’ll do that. I already take vitamin D for lupus, but I will look into getting myself on vitamin B too. I used to go swimming every week, but stopped due to COVID-19. I think I might see if I can get myself back into a routine of doing that again.

I feel better if I take some action. I suppose I’ll get used to it eventually. :blush: x


Hi @SylviaH ,
Sorry to read about the frustrating situations you are going through at the moment. After the scan within a week the report will be generated and able to report it. I can’t believe the length of the time you have to wait. I would suggest you to ring the neurologist Secretary and raise your concerns and request for earlier appointment. I remember I had argument with my neurologist regarding the wait for re port. That was only few days. But I had the report after 7 days.
Also remember be positive, be active and eat healthily then drink plenty of fluids. I am sure you have already read through the parkinson UK information.
Wishing you the very best. Take care .

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Hi Sylvia,what a mix up ! Firstly I would like to say start an exercise programme with PD warrior. It’s 10 weeks on line and I can promise you by the time you see the specialist you will be so much better he may delay meds! All the research evidence points to exercise being as important if not more important in the early years with PD.

Later you might like to take a holiday in Italy and visit the European Parkinson’s therapy centre. An amazing place where they put you thru your paces and advise how you can live well with PD.

Doing all this delayed having to take levodopa for 5 yrs and 9 yrs down the road still only on 600 mg a day.

For me the side effects of the drugs are nearly as bad as PD so I’m keen to go down the exercise route for as long as I’m able.

Hello Tinku

I’m glad to say I have now had a letter through from Neurology inviting me for a consultation in early February which is a great relief. At least I’ll know what is going on. :blush:

Hi Flossie

Thank you for all the useful information. I’ll have a look at it all. I didn’t know about the PD Warrior videos and will have a look at them. I will be very happy if I can delay taking medication! You’ve made me more hopeful that things can be better than I think. Knowledge is power and I’m still learning about all this.

Thank you VERY much.

S x

You are very welcome
This was Baz when he won pd warrior