Oh bugger


#1

That was my reaction when the neurologist stated I was displaying PD symptoms. But then the escape route. Due to your age I will send you for a DAT scan to confirm. As you can imagine I grasped that straw. What does the specialist know she's almost young enough to date my son! The scan came quickly and the results quicker still. Within a month of my first appointment  I was being  prescribed PD drugs. Five weeks on and the lights at the end of the tunnel. My overwhelming tiredness has gone I feel more positive and I am looking forward rather than back. I realise now how depressed and unengaged I had become. I work full time and by mid week was exhausted, and my weekend highlight was sleeping in the chair. I realise there are challenges ahead but I am now ready to face them. 


#2

I wish I'd been as calm as you - I can't remember what I said when I first suspected PD but I'm sure the air was blue! 

Welcome to the forum, Davey.


#3

Trust me that wasn't the real words used, I was wary of breaking moderators rules on first post


#4

Davey

Thanks for the title, it made me recall Paul Whitehouse 'Unlucky Alf' in the Fast show.

Still laughing as I post these links

https://www.youtube.com/watch?v=0GBdzsxgogw

https://www.youtube.com/watch?v=_Dwes9SQg9k

Hope it helps you laugh as well, it really is the best medicine.

 


#5

It seems that the NHS has gone barmy.

Everyone joining the forum seems to have a DAT scan. A very expensive procedure and not conclusive either.

Should NHS money be used for a DAT scan when there are a number of symptoms that point to PD and at the end of the day the proof of the pudding is if the drugs work (providing of course the person prescribing them informs the patient how to take them)


#6

I would like clarification on the DAT Scan question. I have had various opinions of how definite it is. It appears UK. Is one of only a few countries that use it for PD diagnosis.  There's enough uncertainty around PD  without  questions over accuracy of diagnosis

 


#7

 

if it was just symptoms as a pointer to PD

why bother with a test for Wilsons disease ,or nerve conduction tests for motor neurone or an MRI
 or other blood tests, we are told the pills are treating 'symptoms' and not the illness/disease/syndrome any of those symptoms could and can point too something other than PD the result of a dat scan aids a diagnosis, I was told in my diagnosis the result seems pretty conclusive effecting both sides of my brain, it Doesn't tell me how long i have had this illness or too what effect 'pills' will help the 'symptoms'.

If pills were the 'be all and end all' of PD then there'd just be One.

 


#8

I got the feeling the DAT scan was only used to rule out other possible causes of your symptoms.  If nothing appeared contrary to a PD diagnosis, PD it is until such time as your brain becomes available to cut up for a 'manual' inspection and definitive diagnosis.  But that was 10 years ago.


#9

Well, I can only say that the worst thing of it all is the waiting. No one seems in any hurry in he nhs to let you know one way or another and the results are sent from one computer to another, usually the same day!web


#10

Davey

Welcome to the forum. There are lots of people here with experience of pretty much everything that parkinson's can do. As you say there may be challenges ahead but chatting to others is a great way to learn about how to deal with them.

Your description suggests that you were diagnosed fairly quickly.  I didn't have to wait long either, it was only a handful of weeks from first GP appointment to the full 'oh xxxx' moment. Many people are not so lucky and go through uncertainty for ages. I was diagnosed 11 years ago and I'm still working.

Elegant Fowl

 

 


#11

From referral to diagnosis was quick. The hardest part of the story is the previous two years of tiredness depression and family disengagement that has taken a toll on my marriage to the point that my wife has said she will soon move out. I understand that she  feels she no longer loves me and I know the future terrifies her. I have tried to explain that she been living with the shell of me and now I've started meds the real me is returning. Unfortunately I believe the last 2 year have left he so mentally exhausted she has gone from fight to flight mode. Still hoping for a positive outcome but as you imagine the stress is fairly high.  


#12

There is no definitive easy way to diagnose pd.

There are the obvious motor symptoms plus micrographia and dry skin plus cognative symptoms like anxiety and inability to concentrate.

Usually a MRI scan and other tests may be used to rule out other possibilities like MND.

A DAT scan will give a good indication that there is pd present but is not infallible and some people have had clear scans and yet pd is still given as the diagnosis.

You may be put on medication or left to wait dependant on the severity of your symptoms and the way your neuro decides to treat your pd.

When you are medicated a favourable reaction is a strong indicator of pd, however, some pwp are given pills without adequate explanation of how to use them and this can cause further delays or confuse the dx further.

Generally though diagnosis is confirmed by progression of the symptoms and the medication working effectively.

Realising this is the key to managing your pd. Neuros unfortunately dont possess a tool that tells them what is going on in a pwp brain / body, they rely on feedback. With so many variables that can affect the way your medication works it is wise to get as informed as you can be and to find a neuro you can communicate with and who considers all factors before increasing your dose.