Advice


#1

Hi, my problems only started a few months ago, well that is when i started to notice anyway. All the clinical tests were done a few weeks ago and have received a letter from my consultant. The main paragraph is as follows........." On examination he is thin,his voice was hoarse. He walked with a stoop and I observed a reduced blink frequency. While his stride was normal within his gait his left arm swing was absent.There was marked rigidity on examining the left arm, most prominent on the left but also present to a mild degree on the right. There was no significant observable tremor today but very mild bradykinesia. My impression was one of parkinsonism, but given the rapidity of onset and significant signs i would like to exclude a structural leshion in the first instance and have therefore organised an MRI scan of the Brain. If this is normal, given his young age and atypical presentation i think a DATSCAN would be helpful" I obviously have looked at all these factors on the internet and just get more confused! Any input, advice would be much appreciated.


#2

Hi Grantboy.

I have been diagnosed for 10 years now and I still find some of these consultants letters confusing. They use a lot of complicated language that can make you feel inadequate and more anxious than you were to start off with.

I think MRI and DAT scans are commonly used diagnostic tools  for Parkinson's although they don't necessarily give a clear cut result. As for the rest of it I would be tempted to go and see my GP with the letter to get the plain English version of it.

I do know that Parkinson's can be hard to diagnose and there are other conditions with some similar symptoms.

Best of luck to .

mrtoad


#3

It sounds a bit like my diagnosis - atypical Parkinson's. It means that you have some signs of the disease but they're reluctant to tell you that you definitely have PD because some things - your age and the fact that your symptoms seem to be progressing more rapidly than usual - means they want to do some more tests to make sure.

Mind you, I've had a datscan and they still think I'm atypical!


#4

Thanks Mr Toad,

Think i will do That, see my GP


#5

Hi Tabbycat, that is useful, are you any further in knowing whats wrong? Also is a DAT Scan a definitive way of knowing?


#6

 

A datscan is more supportive of a diagnosis rather than definitive Grant


#7

I have found this site very useful, just by looking at other peoples symptoms. I have had frozen shoulder for many years and put it down to the weight i carry on my back during work. I have also found that there is a connection with heavy metals? to PD. I worked on a site in the late 80's early 90's where high levels of Cadmium were dumped (not sure of when they were dumped and have only just found out what was being taken away!). My job was to measure the volumes of extraction that were being taken away to somewhere in Europe and Russia. So I had to go down the holes as they were being excavated and do volumeric measurements . I am glad we have all the health and safety nowadays. I have since been back to the site just to see what it is now, a massive housing development! 


#8

Hi Grantboy

Your letter reads very similar to my case. I have been told that my symptons are atypical. Whilst I am showing some Parkinson symptons, apparently I do not appear like a typical PWP. We do not have Datscans in New Zealand, so I am told to keep taking the tablets and we will see how I progress over the coming months. I am sure the neuro thinks I have something else. I had a brain scan and blood tests for anti-gads (stiff person syndrome) but it all came back good. Good luck with everything. Scooby


#9

Nope, no further. I'm waiting for some (I feel mythical!) appointment with a movement disorder clinic.

DATscans show how well the dopamine-producing cells in your brain are working (in my case, not very well). Supposedly a pretty definitive way of assessing whether or not you have PD but it seems not enough for the neurologist I saw.


#10

That is odd Tabbycat, as i thought that the yanks had proved it in respect of levels etc. hope you get your diag sooner than later? mine will be months yet! just need to move on, if you understand