Desperately need answers


#1
Hello everyone

Have not posted for a while but do keep up to date on site. Please could i have some answers from you to the difference from Parkinson's and Parkinsisim, or is there not one?

I had Dat-scan last June2011 which confirmed i had Parkinson's and started Roprinorole 4mg 6mg 8mg.
Recently changed hospitals and she wanted another MRI on cervical spine,looking for cervical mylopapthy before she increased my meds.I meet my new Parkinson's nurse who was very nice buy after asking questions about cervical mylopapthy she told me that she was looking for something else because i did not have the look of a typical P.D. person.So during the 3months wait for result i could not help but get my hopes up that i have not got P.D..After having to chase them her letter said i have Parkinsisim. I need to know if there is a difference as my partners father had Parkinsisim which was P.S.P and passed away within 1 year. Trying to stay positive but she has not even bought my appointment forward from December feel i need answers i know i am one of many but the worry is making me so upset.The copy of her letter said she want's my meds increased to 16mg then Levedopa which seems a big jump to me.And i will be reviewed in December i am worried sick.Thanks for reading any answers much appreciated

#2
Hello hopeful,

Firstly I feel that I should point out that I am not a clinically trained medical practioner.

My understanding is that the term Parkinsonism is a generic term referring to mobility problems, of which PD is the most common. But there are other conditions that, whilst the signs and symptoms are similar to those of PD, have different causes and progression.

The most usual (currently) diagnostic tool for PD is a DaT scan, but it is not infallible.

Taking antiparkinsons medication such as Levodopa may indicate whether or not your sympotms are in fact due to PD. By definition will respond to this medication. Perhaps this is why your PD nurse has recommended the introduction of levodopa?

As far as I am aware PSP is a very rare form of Parkinsonism and , like PD nobody dies because of it, but with it.

May I suggest that you write down all your concerns to take to your appointment in December. Keep adding to the list as they occur to you . It does not matter how messy it looks (ever seen a Drs handwritten report?) In the meantime, perhaps you could 'phone your PD nurse to express your concerns. The PUK helpline (no at top left of this page) is a source of support and knowledge second to none.

I wish you all the very best

#3
Parkinsonism is a term describing a condition akin to PD,or very like PD, but different... It can be a better or worse diagnosis. You are clearly and understandably upset and worried, and I think that you are entitled to an explanation of this diagnosis sooner rather than later. It seems very unfair to leave you hanging around with incomplete information, that will only add to your mental anguish and certainly will not make you feel any better. It is only natural for the brain to come up with all kinds of unpleasant scenarios, which might be totally inaccurate and exaggerated. What about your GP? They are supposed to look after their patient's wellbeing...