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