Diagnosis reversed- psychosomatic?


#1

I was diagnosed with early onset Parkinson’s at the age of 46 about 8 months ago. They didn’t give me a DATSCAN (and still won’t) but I have been responding well to Levodopa. I saw my neurologist again on Monday and he has said that he no longer thinks I have Parkinson’s but that it may all be Functional aka Psychosomatic based on his observation that I am depressed at the moment and he thinks he is seeing too much improvement in my symptoms (the depression is only about my health, there’s nothing else going on). Has anyone else been through this? Obviously, if I don’t have Parkinson’s that would be great but I just don’t feel that his assessment is correct. Has anyone else been through anything like this either on the road to diagnosis or post diagnosis? I don’t really know where to turn now. He wants to take me off all meds and refer me to a psychiatrist and in the meantime I am left with these hugely debilitating symptoms. I’ve read that lots of people struggle to get a diagnosis but I now feel like he thinks I’m crazy when I am in such a physical mess and really don’t think there’s anything psychological going on. Sorry it’s a bit of a niche question but any insight or advice would be appreciated.


#2

I am sorry this is happening to you. My brother had this said to him. They said because my uncle had of that my brother took on his symptoms. A load it a load of bull pordan my expression. Why would anyone want to think they had this. We had a family meeting with the dr’s it was supposed to be the first if many it was the last after what I had to say. My brother died a lot of years later and I mean a lot with the dr’s asking us if they could do a special ortapsy on him in the aid of helping other sufferers . Which we aloud. So do not think you are going mad go with what is happening to you. Get another opinion


#3

Hi Jules
You make an absolutely positive point firstly on neurologists themselves because I don’t hold them in high esteem when it comes to P D the diagnostic systems they use are at best just trial and error at this moment in time and I sincerely hope PDUK can help change that in future.
I first saw a neurologist two years ago and because my GP already had me on sinamet he didn’t even examine me even though I had waited six months for the appointment he advised that I stop the medication immediately and return.
After I returned he gave me a ten minute consultation consisting of a walk up a corridor, DECIDED in his report that I had pd on the left side and clonus on the right and prescribed ever increasing amounts of levadopa.
Six months later he withdrew the medication and prescribed antidepressants his report now said I was suffering from anxiety due to some previous mental trauma which neither of us could identify and a functional tremor so in changing his mind I’m still left with pd symptoms like insomnia, right leg tremor and a left hand that could not pull the skin off a rice pudding. Also I’ve lost my job due to health and safety reasons but my GP believes it’s pd .
Still I’ll see my neurologist again I August and maybe he’ll be able to explain why I now sit down for a pee (saves the mess) or is it.still all in my head.
So I understand your limbo situation only too well.
I truly hope you get a proper diagnosis soon it may not be what you want to hear but at the very least you’ll know and will be back on the proper medication and be able to fill a form in without ticking the box(I don’t know) when asked what is your illness.
Good Luck going forward TOMMY


#4

Hi jules i think you really need to push for a dat scan to find the answer if they refuse try medical health council or your mp either way you need to know what,s happening to you
Petec


#5

Hi Peter

Hope that you and your mam are enjoying this good weather.:sunglasses:
Hoping all okay with you. Say hello to your mam from me. X


#6

Morning babs we, re both OK thanks mam says hello and thanks for asking trust all is well with you and your family weather been good but wet here this morning hope that was, nt summer wish I knew what you and Tommy were going on about
Petex


#7

Hi @Jules2,

It’s really awful that you’ve had such a confusing experience with your diagnosis and I’m sorry to hear that your symptoms have worsened. I agree with Peter, you should definitely push for a DATSCAN with your GP or a Parkinson’s nurse (even though you haven’t been officially diagnosed).

As this is a niche question, you may find it helpful to speak to one of our advisers about this via our helpline. They can put you in contact with a Parkinson’s nurse and they have extensive knowledge on symptoms. Please give them a call on 0808 800 0303.

Hope this helps.

Best wishes,
Reah


#8

My husband had the scans and was told by the Neurologist he probably has Parkinsons but it cound be Parkinsonion syndrome but they would not be able to say for definitley until he started taking the medication. If the medication works it is Parkinsons if not it is the syndrome. If the Neurologist can not decide where does that leave you.Make an appointment asap and get the necessary scans done.


#9

Thanks everyone for your input. I managed to scrape together the money for a private second opinion which I had today. The second neurologist believes it is Parkinson’s and not a Functional Disorder but I can’t afford a private DATSCAN so I will need to ask for yet another referral to a different neuro on the NHS and beg for the scan. He said the only sign of functional illness is my tremor which is intermittent. It is a resting tremor and seems to stop if I concentrate on making it stop or if I start moving my hand around. I still feel pretty confused but glad that the second neuro didn’t just think I was mad. What a journey we go on to diagnosis!


#10

Hi jules glad you seem to be getting some answers you could try your local comunity health council or your mp or local councilor you must be able to get access to datscan on nhs just don,t give up good luck
Pete


#11

Hi Jules,

Glad you managed to get a second opinion, how confusing for you! And very frustrating. Please don’t forget to reach out to us on the helpline, or maybe a local adviser? They may be able to help you push for a new neuro given the history with your current one.

All the best,

Kat


#12

Hi Jules,

My story is kind of similar to yours (early onset diagnosis with 44 a year ago), and even though I was lucky to get the Datscan immediately (and the result was positive), I did - and still do at times - experience some of the symptoms you are describing as well i.e. temporary disappearing of PD symptoms that has to do with my mental health/state. So this part is known to me. I am also in regular treatment with a psychiatrist and these sessions also help me a lot to understand what the hell is happening and how to cope with this, as sometimes this whole state gets realyy hard to understand and deal with

So, as you have seen from the previous posts, what certainly can help is to get clarity through Datscan and find the right contacts to talk to about this, e.g. via an experienced nurse…

Good luck!


#13

Jules,

In my experience it appears that DAT Scans are not infallible, as they can be mis-interpreted. I had a “positive” DAT Scan at the RVI in Newcastle UK in 2006 however, the results were dismissed by a Neurologist in Singapore, he said that I did not have Parkinson’s.

In 2014 I am consulted 4 Neurologists and received 4 different diagnoses.


#14

Hi. I’m in the US. YOPD. 16 years since tremor onset. I’ve been very lucky. Still in stage one.

Apologies. I wrote this a while ago and never hit the reply button.

I wonder if the reluctance to give DATSCAN is because there’s growing concern now in medical community that the DATSCAN is unreliable. That’s what they’ve been telling me anyway. Too many results that don’t make sense.

With no bio marker for PD, In the best case, after “tap-your-fingers-like-this”, we turn to “does taking l-dopa relieve some of your motor symptoms? If not, then you might have a non-responsive Parkinsonism!” Wtf? (Pardon my French)

I’m lucky because like many women with PD, I’ve responded almost too well to l-dopa. And over the years I’ve also been lucky enough to curb and push back some symptom progression. There are loads of people who make the same claim. (Btw. Exercise, diet and hydration, sleep, stress reduction, social/grandchildren/pets and religion if you’ve got it are the usual suspects. Not a cure, but very effective for fighting symptoms.) But we also have to remember that Parkinson’s is unbelievably varied. Now, for example, according to DATSCAN, I’m ravaged. Little dopamine activity one side, zero on the other. And yet, some days with just a little l-dopa and lots of self-help (listed above), I can appear to others as asymptomatic. Peel the shell for a peek inside at what I really feel, however, and you might think differently. But still pretty good for 16 years with PD.

Respectfully, I admit I’m shocked by your doctors. Of course we have some similarities in US with docs not knowing what to do, but your situation seems so much worse. Like this trend for unilaterally diagnosing symptoms as psychosomatic?! Without even a second from an expert? That strikes me as deliberately ignorant. Cruel even. (I have harsher words, but will refrain ;). I acknowledge that no one truly understands PD. It’s causes, triggers, and progressions are too varied. And there’s only alpha-synuclean misfolding and prion effect to hang our hats on. But research in Britain and elsewhere is making new strides. Maybe even real relief in our lifetime. So, at least we have that.

But for what we have to deal with now, there are in the last 10 years especially, great programs developing for people with Parkinson’s in the US. That’s no help to you either, if none of them has crossed the pond. There MUST be programs in the UK!

Have you seen a specialist for motor/motion disorders? They’re in the department of neurology here, but receive specialized training for Parkinson’s. Pd is so much bigger than motor dysfunction, ( recent studies show that the non-motor part of Parkinson’s was considered more troubling than motor dysfunction), but at least a specialist would have the proper training to come to some relevant conclusion.

I’m still shaking my head in disbelief at how you were treated. I hope it gets better and soon.

&#x#! on your behalf,
Chrystal


#15

Hi again, I should have looked into your updates before sending a bunch of hot air! I hope you found something of what I wrote useful. And so glad you’ve found this forum to help see you through.

Most importantly, I’m relieved to know you got your diagnosis, Confirming it’s not at all something you made up.

I wish you all the best going forward,
Chrystal