Still confused


#1

Results of datscan say not idiopathic Parkinson. Still going to have more tests. Possible link to brain haemerage and Parkinsonians and cognitive decline. Next appointment November, by which time other tests will be done and results in. Maybe answers then? Very tired today and a bit disappointed not having answers but grateful am still under the consultants care and they are still looking for answers. The 

Porthos 


#2

Vascular Parkinsonians?


#3

I forgot to ask about the hallucinations 


#4

Hi porthos

  Have you been referred to a memory clinic ?

  I was dx with Parkinsons June 2014 after a cognitive meltdown at work that dr thought was a stroke at first after an Mir scan and a visit to a nuro pd was dx, while the meds helped with tremmere and walking made no difference to my cognitive problems , nuro referred me to memory clinic and was dx with LBD June 2015 .

Dont want to worry you but if you have cognitive issues it might be worth asking to be referred.

  Live well   Cc


#5

Hi Cheshire Cat

Thankyou for your reply. Similar thing, things got so bad at work that the works occupational therapist, a trained nurse in her previous career, had to advise my dismissal, on health and safety, whilst the local drs were still sending me back between mental health and neurology becaue they both thought I was the other person's problem. Our local hospital not long after was put in special measures and both departments heavily criticised, I'm so glad to be under the care of the London hospital now.

I had a memory test by the London hospital neuropsychologist last year that showed cognitive decline and the movement disorder specialist wants it repeated before my next appointment. I still have all the symptons that put them on the pd route, tremor, feet gluing to floor, sleeplessness, teeny writing, etc, but I know there is things that mimic it, the parkinsonians?

I've got to the point I don't care what it turns out to be, so long as I know. Because I'm still working age but not fit to work I get really stressed at renewal of benefit time that all I can do is explain symptons and how they affect me, but can't tell what's causing it. And of course the first thing people tend to say is how well your looking, which of course I want to look good but I often feel that they are implying that they don't believe me.

Sorry to waffle on, I need to do something to cheer me back up today and at least I know I am with a good medical team that haven't given up on me because the first idea fell flat!

Porthos 


#6

 

Hi


Reading that people judge on how we look, Only yesterday as i was waddling across the surgery car park having handed in my prescription i saw someone i knew '' your looking better not so pale today" and I have a label for what ails me, but i still have to remind the observer of what it is and the nature of it that it wont be leaving me anytime soon, how difficult it is when you cant put a label on it as if you are a member of a club that no one wants to be in but you yourself have been denied membership.


We have to remember we live with a wide set of symptoms & conditions physically and mentally under the umbrella of a name that it has been given 'Parkinsons', it isn't perfect to fit every thing or every one the same and i believe it is only observation of a set 3 features and time that gives us that diagnosis, for all that fit it and don't there must be answer


#7

Thank you Sea Angler

I've strange, but I have had a sarcastic it's a bit early to be pickled and you look so well I didn't realise your been ill, on the same day. That's life at the Mo.

Oh took me to the pictures to cheer me up today, it ended up an incredibly moving weepy!

I just have to be patient while the drs work things out, at least things are moving forwards. I think I had expectations of some sort of magic wand taking all the problems away.

You have all been very kind on this website and that has helped a lot.

We have a good beach for sea anglers, just your user name makes me smile.

Porthos