Changed diagnosis


#1

I joined the form about three years ago after being diagnosed with pd. My symptoms were always only down my right hand side and my neurologist eventually decided this was unusual and asked for a second opinion from a neurologist who specialises in pd at leeds general infirmary.  I have now been back to my neurologist - Dr hassan who has told me then devastating news that they both diagnosse cortico basal degeneration. the pd diagnosis was a shock but this is unbelievable.  There doesnt seem to be an awful lot of info and the pd tablets dont have any effect.  It all points to a scary future and I would love any info, or chat with anyone in similar ondition, or just some support.


#2

Hi Pegasus

I can relate to you because  several years ago I developed additional symptoms which led my neurologist to suspect that I might have Multiple System Atrophy rather than Parkinson's. After a week of extensive tests at the National Hospital for Neurology it was decided that the original Parkinson's diagnosis was correct and the new problems I was experiencing were eventually attributed to sudden side effects to the Ropinirole that I had been taking for around two years without problems. It was a relief to find that I "just" had Parkinson's and not something far more serious.

Like MSA, CBD is a much rarer condition than Parkinson's so naturally there is not so much information readily available. Is there a support group you can contact? How certain are they of this diagnosis? My PD symptoms for a long while were limited to my right hand side, although more recently there are signs that the left is becoming affected too, or maybe I just haven't noticed it before.

I wish you well and hope you find the information and support you need.


#3

Hi Pegasus

so sorry to hear this. What unwelcome news and at this time of year.   It is certainly the most difficult diagnosis to face and hard to know what to say.  

I believe there are forum around where I hope you will get support .  

There is a UK one     At Health Unlocked PSP community

I too wish you all the best.


#4

Thank you for your replies. The 2 neurologists seem pretty sure of their diagnosis, Mainly symptoms strongly down one side. THe pd drugs stalevo, rivastigmine, sinemet, rasagilene and others have no effect on symptoms. there are other symptoms too and over a short period of time symptoms have been quite aggressive..... I had DAT scan last friday but dont know how long it takes to get results...the neurologists are expecting it to be normal, and whilst I never thought Id be pleased to have PD I am crossing my fingers that the results show PD.  Thanks for the information on the PSP site...I will look into that.  Have a good Christmas x


#5
Best wishes to you at this very difficult time.  
 
When you are ready you may like to visit the UK PSP site.  
 
This is information from their forum mentioned above.
 
"The PSP Association offers advice, information, practical and emotional support to people living with PSP and CBD, while at the same time supporting research into treatments and ultimately a cure for these conditions.
 
Our aim is that people affected by PSP and CBD do not feel they have to face the future alone. We offer support through our Helpline, Information and Advisory via telephone or email, our network of Local Groups and our Specialist Care Advisers, who work to ensure that people affected by PSP and CBD have access to good local support. We also offer a wide range of resources and publications.
 
Our helpline and email service is completely confidential and is open Monday to Friday 9.00am to 5.00pm"

#6

Hi Pegasus ,

I was diagnosed with parkinson plus syndrome in July 2013 and the letter from my consultant said it could well turn out to be corticobasal degeneration . During the consultation I was told it was either MSA PSP or CBD . I was absolutely knocked sideways and didn't know where to turn as I was promised a pd nurse but never got one . Then I went to see Gp and he said it was too early to have one . I was phoning helplines left right and centre for some support . I've got a specialist nurse (neurology) practioner who I see every month now !!!

Just been to see physio today to see if i could get some botox injections as I feel too that any form of levodopa is not working too well. Things I find that do help are diazepam and clonazepam as I have clonus in the ankle .

My other symptoms are dystonia i think in my right leg hence the request for botox! . I have tremor from the clonus as well as a tremor from the parkinsons in my right leg as well  . I have bradykinesia, resting tremor and cogwheel rigidity in the right arm . Good news is I am still getting around ok . Cant brush teeth or do much with my right hand though . Left side not too bad at the moment . . Would like to hear from you as maybe we could compare symptoms and advise on meds etc. All the best to you :)