Shelly


#1

Hi  im a 46 year old mum of 2 with a grandaughter too. Recently diagnosed after a datscan and several pd symptoms. Started on simenet which is helping.

Saw my gp today who says neuro has said i have parkinsonism and dystonia yet he told me it was parkinsons and dystonia. Then gp looked at datscan results and said must be parkinsons.

Im totally confused now as to my diagnosis, is thete a difference between the 2 or is parkinsonism just a general term?

Any thoughts would be much appreciated!!


#2

Shelly, you are not alone, from my teens I have had a tremor which got to be diagnosed as Essential then Dystonic Tremor(I am 64).  When I was diagnosed Parkinsons the Consultant wouldn't have it that I had two tremors.  Having had Deep Brain Stimulation done they now realize that I do have two tremors so I live with the Dystonia, yes Shelly it is frustrating but at least your Neuro man recognises this so if and when you get offered the DBS they can treat both at the same time so both will be under control.  With having the DBS done this controls the Parkinsons side but not the Dystonia and I am on Madopar(4 x 250mgr), so when you go back to your GP tell them that you have two tremors and that it is not just Parkinsons !!  Both are tremors but Parkinsons in my case was more severe, in fact I wobbled like a jelly and in the end I could not write.  With the Dystonia it is when I eat, the tremor kicks in when trying to use the knife to cut or have to concentrate on doing something like changing a plug or putting a screwdriver on to a screw.  Things that require extra concentration. 


#3

I have been diagnosed with Parkinsons idiopathic but also referred to as parkinsonism which I am told is an "umbrella " type term for all types of PD.

I was in my late 40's when diagnosed and as such the risk of getting secondry dystonia is higher than older newly diagnosed folks.  Dystonia is the cramping of the feet especially, my toes curl under  when it hits my feet turn outwards and it is too painful to keep my shoes on.  hands also without notice take on weird shapes without warning.  Tremor is part of PD for some. 

I was told when sitting keep feet  firmly on the floor, pushing heels down, if dystonia strikes press down harder it works for me most of the time.  

The PDUK site has a helpline, if still worried/unsure/etc give them a call.  

All the best and take care 

 


#4

Hi teehee

Thanks for that my pd nurse confirmed exactly that today so at least i know whats going on!

I get awful cramping in my feet its very painful so i know exactly what you are saying.

They have just upped my meds so hopefully will be feeling the affects soon

Take care

Michelle