Getting a diagnosis?


#1

Hi, 

I wondered if other forum users have similar experiences with getting a diagnosis, and dealing with both physical and mental health professionals.

In short, my Mum has suffered from spells of depression and anxiety over the last 5+ years, which although at first would mean good and bad spells is now pretty much a constant presence. 

After a couple of years seeing the GP, she eventually saw a neurologist. After a DAT scan he said that she had some Parkinsonisms but not Parkinsons Disease. We experimented with sinemet to know effect. Mum has been taking olanzapine for a few years and we were told that this would not effect her Parkinsonism symptoms or how sinemet works. 

I was sceptical of this after reading about reports of olanzapine excacerbating Parkinsons symptoms. 

After a long time we saw another neurologist privately,  who diagnosed Mum with drug induced Parkinsons as a result of the Olanazapine. 

We tried to come of the Olanzapine but this was unsuccesful for her mental health. 

We saw the same private neurologist again who now says mum has a rare form of Parkinsons which displays in anxiety for many years before being detected. He says nothing can be done before she comes off olanzapine. Understandably we are hesitant to do this after the detrimental effect last time. 

Mum has been under the care of various psychiatrists over the last few years, who are loathed to take her off olanzapine. 

The biggest issue we face is the lack of communication between the neurologist, parkinsons nurse and psychiatrist. Letters sent are not read by the other party and we are left in the middle to try and communicate the information, whilst each side writes off what the other says- to the extent that they belittle there credentials and dismiss what each advises for Mums treatment. We are left to try and work a way through this somehow, without Mum ever really receiving an actual diagnosis that is consistent. 

Any advice on how to progress this - without locking the psychiatrist and neurologist in a room together so they are forced to communicate! - would be very helpful. 

Thanks in advance.


#2

Personally I would lock them in a room together they sound like the Dr's from hell you might get some good advice from the helpdesk on here ask to speak to one of the PD nurses. Failing that I would change Dr's just because they have a medical degree does not mean they have peoples skills or they are good at their job.

 

Good Luck I do hope you get it sorted.

 

BB xx


#3

Hi guys, new to all this first post, I have a younger sister who is undiagnosed at this stage however we as a family [I am the elder brother] are very, very concerned as she is showing symptoms of Dementia/Parkinson's? Although she has been seeing her GP, she has come to me seeking help. So naturally I have arranged to attend her next appointment with her. From the posts on the forum it seems clear that getting a diagnosis is not going to be easy. So far she has had a CT scan, been told it is the menopause, now awaiting the memory clinic? I believe I need to push for more extensive blood tests? An MRI scan? To be seen by a specialist neurologist? Any advice on how to shortcut the normal NHS hoops would be appreciated.Thank you.

     


#4

Hi Piotr,

Sorry to hear about your sister. Please read what I wrote on the post 'In between appointments'.

Telephone the health professionals concerned and nag nag nag. I emailed them as well.

Good luck.

Twinks.


#5

Hi you will have to be very strong and calm basically put you foot down and do not take no for an answer where you will have to wait for the normal process of going through the NHS generally waiting list if you can be available for any appointment at short notice then they can put your name down on a cancellation

list. This I done and was dx in three months and the best way to confirm dx of PD is a dat scan all CT and MRI do is rule out everything else.

Dat scan is not available everywhere you may have to be prepare to travel.

Generally dx from referral to dx is 6 months to 2 years

I wish you good luck let me know how you both get on.

 

BB x


#6

Piotr,

There is no way to shortcut the normal NHS hoops, you can only bypass this. Unfortunately bypassing means paying for private consultations which from experience can be quite expensive. 

Neurological conditions can be difficult to diagnose.

Take care.