So it all comes down to the fact that the medics still know little about exactly how the brain works (and many of them say this!). It is a fantastically complex organ and we are far from defining what goes on in any one set of circumstances. This is also why I am very cautious in the use of medications, because we can be at best unsure if they work or even if they don’t work - what are the symptoms of the illness, and what are the side-effects of the medications? - very often there is overlap, as we all know, and the neurologists only have what we tell them to go on. The ‘experts’ are in fact us, the sufferers!
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Hi , this is my first forum contribution, but I was sorry to read about your symptoms and was struck by the description of your symptoms which are identical to mine. In addition , I struggle with speaking and chewing and have a pronounced lean to the left along with an over active bladder. Four years ago I was diagnosed with Parkinson’s disease but in the last 6-8 months my symptoms have stopped responding to drugs, I need a walking frame and very soon, a wheelchair. My balance is dreadful.
I seemed to respond well to Parkinson’s medication initially but then I started to decline more rapidly so I saw a private neurologist consultant in Queen’s Square, London in January. He was so surprised at my rapid decline and my poor balance that he suggested a brain MRI .
In May, I was told that I had MSA a rare neurological degenerative disease. I would recommend having your MRI read by an experienced neurological radiographer as my local radiographer didn’t pick it up. I saw Professor Foltynie at UCL if this is helpful
Morning @alison2
Sorry to hear this, to have a new diagnosis 4 years down the line- must have been a scary time. What are the plans for your treatment now?
Thank you for the info re the radiographer too.
Take care of yourself 
Hi @Littlewren
Your post about the work of Prof Jon Stone I find very interesting, especially the view that is taken about patients who attend alone.
When I was given a pd with clonus diagnosis I had a chaperone however I was given an appointment to see a more senior consultant which I attended alone and indeed the diagnosis was completely different.
My circumstances at home mean that I have to attend most appointments alone even my recent two when I had to have sedation which causes issues on being released from day surgery.
I know for sure that when (customer’s) attend assessments alone they lose points as well as the fact that they are no longer a patient.
This is due to the algorithm programme designed by the extremely trustworthy company Cambridge analytica that the “health care professionals” not doctors use.
Which is food for thought.!
So to any Neurologist, Minister or MP who happens upon this post.
WE ARE NOT ALGORITHMS, we are humans with a medical condition.
Also to any so called health care professionals, you are human too and may well end up on the other side of your desk someday.
Think On.
Tommy 
™
I agree with all you say Tommy, however I feel I should point out that the paper I mentioned (and the authors) are just pointing out associations they have found and on the whole the authors are the good guys sticking up for the FND/FMD people, particularly in terms of attempts to shift away from terms such as conversion disorder etc. where the causes seem to be shrouded in mystery and in some way caused by the patient’s repressed anxiety, stress, life events and so on. I didnt want to be completely scathing of the authors but as I’d already mentioned earlier, the medical profession cannot have it all ways by conveniently flipping the subtle ways in which symptoms present around until they can create a ‘robust’ enough picture of something that matches a condition that can be tested for or objectively observed.
I have particular issues around diagnosis and my own medical history has demonstrated its own challenges for medics and myself and still does - I had a diagnosis of temporal lobe epilepsy for around 20 years, only for this to transform into narcolepsy with cataplexy, with neurologist after neurologist baffled by this, yet the sleep clinicians (on the whole in the UK, thoracic specialists treat narcolepsy, not neurologists - yet narcolepsy is caused by a reduction in hypocretin cells/production in the hypothalamus in the brain, not chest - so right away we can see some of the reason why stuff doesnt get joined up) I see (who are absolute treasures) don’t ever think I had TLE, it was always a sleep issue - neuros sit on the fence and declare I did have it but whatever I have now doesnt seem like TLE, with plenty of literature suggesting narcolepsy very easy to mis diagnose as TLE or under diagnose completely. The whole point of me mentioning all that is because I kind of like those clinicians that admit I might present with something they haven’t experienced before - what I always am amazed at however is the sheer lack of genuine curiosity and interest in getting to the bottom of things - but the individual and political factors of that are way beyond the scope of this post! If they aren’t motivated by the more intriguing presentations of their clinical speciality, I struggle to understand how they justify doing a proper job… And I should also say that out of the handful of good egg clinicians that I have encountered over the years, they definitely go some way in restoring faith!
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DAT scan will tell. It did so for me.
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Hi Tommy,
As choppy as your diagnosis and then non-diagnosis journey has been, I’m glad there has been at least some progress.
Best wishes,
Reah
A DaTscan will confirm if there is problem with dopamine (or not) but it cannot confirm a diagnosis of PD 100% as there are several rarer conditions in which dopamine is also depleted. These often present with symptoms indistinguishable from PD initially with other symptoms evolving over time. The “correct” diagnosis can often only be made at post mortem so there is much research in this area.
An astute neurologist may also suspect another diagnosis if ‘PD’ does not progress in the way they would expect or respond to drugs as expected - what are sometimes called Parkinson Plus Syndromes. My husband was diagnosed with PD a year ago after a +ve DaT scan but his neurologist has begun to suspect that he may in fact have DLB - which sadly would not surprise me.
Hello @Mountainair
Thank you for sharing this. It’s just so disconcerting that what looks like PD could actually be something else. No definitive answers.
Had a DATScan today, now more waiting to find out if dopamine level is abnormal. Feeling like I might still have a journey ahead… 
Best wishes
Best wishes DT & I hope you have some answers soon too. Having a good neurologist who specialises in movement disorders is half the battle and you seem to have a good one now too. You are not alone in having seen more than one neurologist - my husband had a bad experience with his first one, arrogant man who discharged him undiagnosed (turned out he was a headache specialist!) but we are very happy with the expertise & kindness of the neurologist he sees now.
Look after yourself, we know how difficult the time around diagnosis can be, especially all the waiting.
Many thanks @Mountainair, that’s very kind.
I have a great consultant now, and the team at hospital were just fantastic today.
Yes, I wasted a lot of time with my first neurologist which prompted me to pay to see the second one privately just to speed things up! The waiting is awful.
And a good consultant makes a massive difference. My current one is empathetic, thorough and supportive. The first was detached and dismissive… and came across very rude.
Best wishes to you both for now😊
Hi DT, I was lucky I guess in the sense that I was referred to a neurologist who specialised in Parkinsons who after asking me set questions was able to diagnose me with onset Parkinsons at the age of 51, she sent me for an MRI scan afterwards on a different day to rule out anything else. She said the only way to diagnose PD was clinically via specific questions about symptoms & put me on madopar straight away. She retired a few months later sadly and I was given another neurologist who though was a PD specialist & very nice was from Burma & I had trouble understanding what he was saying. I asked to be referred to another PD specialist who I’d looked up and had heard of via my PD nurse called Dr Paviour who is excellent.
Hi there @Nufcash
It appears that a diagnosis of PD is given often without scans and just on clinical observations alone …I think my neurologist (a movement disorder specialist) wanted a DATScan as the last ‘piece of the puzzle’. If it’s not PD, he’s spoken about treatment geared towards FMD (physio).
My symptoms are very much PD symptoms but as we know, there are so many movement type disorders.
I hope the Madopar is helping 
Hi DT, I’m on a different cocktail of meds now & had the DBS op in October 2017 which has controlled & slowed down my symptoms & given me a life back as well as cutting my meds by half. I’d never heard of a DAT scan until a friend of mine told me he was going for one before being diagnosed with PD.
Hi DT, thanks mate, I still have baddish days now & then but not complete switch off where I’m super glued to the spot & where I’ve had to cancel appointments because of switch off. It might not be for everyone but I couldn’t stand being stuck indoors & unable to live my life so it was a no brainer (pardon the pun lol).
Any diagnosis yet?
@Nufcash well, I think it’s a courageous move and one that’s paid off for you 
I agree, it’s fantastic- not perfect- but fantastic.
No, no news yet. I thought I’d be used to waiting by now but this is awful
Hi DT, Well the prospect of having a black & decker drilling into my skull didn’t seem appealing to say the least lol but after weighing up the options & having a chat with my family I thought whatever! I need my life back & if I don’t take the chance I’ve been offered I’ll regret it for the rest of my miserable life. I had to go through various tests & questionnaires to fit the criteria which was like doing a school exam after answering question after question but after qualifying I thought wow I’ve just passed now I get the chance of having my skull drilled lol! The op itself was done while I was awake & painless but a weird experience, I was put out for the device to be fitted (it’s like a pacemaker). The battery in it is non rechargeable & has about a 4 year life span. The only pain was when they fitted the head frame on which was indescribable but after 3 nights in hospital worth the pain in the end.
Hi DT, like a few on here my story is similar, in fact I’ve been diagnosed twice with PD, after I disputed first diagnosis, I wasn’t willing to accept it after a ten min consultation, went for a second opinion, second consultant said no it wasn’t!!! Said it was stress and anxiety… but symptoms gradually deteriorated had a DAT Scan which will give a definitive answer was then told I’d had it for ten years I’m now 52.
Due to my previous job I’ve started working with the guys at Medical Detection Dogs who are training dogs to detect PD in the hope that it may be able to assist with a diagnosis…
Good luck with your diagnosis, and if it is PD it’s not the end of the road although it may seem like it, there’s 100’s of us here to support you.