Hey guys. I’ve been reading your forums for couple of weeks now and the level of support is incredible. What lovely people you all are and how are you seem to be coping.
About three years ago I was sent to see a Neurologist as my left hand is starting to deteriorate in movement. He thought it might be a functional movement disorder, he recommended physio but this didn’t work.
Two years old I started to have a shake in my right hand but also other symptoms were starting to creep in. Fast forward to now, and I also now have cramping in left foot, toes continually curl under, complete rigidity, extreme lower back pain, aches,no dexterity in either hand, I’m slow moving, my gait is poor, no swingy a movement in arms when I walk, looking like I’m braced for impact all the time, I have a pained look about my face continually apparently, handwriting now tiny and illegible and have to voice dictate any typing.
First neurologist in April this year said it’s a functional movement disorder. Can’t be Parkinson’s. Ordered an MRI which came back clear. Referred me to his colleague…
Second neurologist suspects Parkinson’s but has ordered a DATScan which I’m due to have on Friday 2nd Aug.
I’m very confused and very apprehensive. I’m 40 years of age. If it’s not Parkinson’s, what’s wrong with me! 
Hi DT,
Welcome to the community. We’ve got lots of helpful information and advice about Parkinson’s symptoms and diagnoses on our website, which you can find here: https://www.parkinsons.org.uk/information-and-support/do-i-have-parkinsons.
We’d also recommend you reach out to our Helpline, as they’ll be able to advise you on this in greater detail. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.
Hope this helps.
Best wishes,
Owen,
Moderation Team
Hello DT
Your story is very similar to mine. I think my GP had decided it was Parkinsons when he first sent me to the neuro. Neuro said --I am not ready to make a diagnosis based on your symptoms but I can promise you it is not Parkinsons. 9 months later I was sent for a datscan and diagnosed with Parkinsons. It is difficult to make a diagnosis in the early stages, and the neuro you saw may have been a specialist in one of the other conditions. Do try the helpline, and the information sheets.
Best of luck
Hi - your story and symptoms are very similar to mine, so I sympathise…I currently have a FMD diagnosis which I’d be more than okay with but the more I read about it, functional disorders and how to even achieve a definitive diagnosis, the less faith I have in any type of diagnosis whatsoever…the reason I say I’d be okay with the FMD diagnosis is only if my arm improved when distracted - but it doesn’t, it gets worse, Ive had no arm swing in this arm for years and if you saw all my symptoms written down, you’d need convincing I didn’t have something going on.
I agree wit Mosie above - the knowledge and curiosity of the clinician is vital but I feel sometimes we can’t win as I have read papers recently that more or less frown upon ‘diagnosis chasing’ and seeing this consultant and that consultant and coupled with the experience I had 2 years ago when I realised no arm swing isn’t really normal was that I am some sort of fragile, anxious 40 something female, who knows a little too much about possible neurological disorders who is desperately hoping to get a positive diagnosis for whatever reason. In fact, even mentioning to clinicians that you have researched and read papers - you can see that they assume the position that you shouldn’t be doing this - that is what you’re up against. That a patient wouldn’t research their own symptoms is ridiculous…as a result, it hardly makes me want to see anyone ever again, let alone request a Datscan. Hope you get answers soon and are stronger than me in challenging the medical discourse (that I have fast become to despise). Good luck with everything, be interesting to follow your journey 
Thank you.
The frustration has been too much.
The GP gave me a essential tremor diagnosis last year. We now know it’s not.
Diagnosis is essential to know how to move forward. Keep going
I’ll update when I know more.
Best wishes
DT
Best wishes.
Hi there
Thank you so much for taking the time to respond to me. It’s limbo land at the moment. I’m hoping the DATScan will mean a diagnosis result either way.
I was interested to hear of your similar symptoms.
Best wishes to you.
DT
Similar history DT! But fear and anxiety can really make those symptoms worse, and yes, I know it’s easy to say. However, the one good thing about all this is that each person’s progress through the Parkinson’s or not-Parkinson’s world is very different - a cliché but it’s true. So there is always room for you to incorporate it into your life and take control of it to some extent. Good luck with your appt on 2nd August, fingers crossed (if you can!) and write the questions down before you go. Thinking of you.
Thanks @Tamsin.
Yes, everyone seems to be different.
What was your diagnosis Tamsin, if you don’t mind me asking? 
Hi @DT.
I’m in the same camp as littlewren and I have had a dat scan.
I’ve been pillared by the neurologist who seems to have it in his head that I would rather have a serious condition than a mere umbrella term of F. N. D.
He then has the audacity to ask which disease I’d rather have and gave me a choice of four.
To which I replied “is none of the above not on the list”
It appears to be a problem to them that we should be asking for a definitive answer.
My own gp said that all my symptoms point in the direction of pd.
Anyway I have written to the neurologist pointing out that his little side job as an advisor to the dwp in my view may be clouding his vision and in my opinion is a conflict of interest and he attempted but failed to discharge me.
So I’m now starting the journey again with a new consultant and accept that it will take as long as it takes.
Meanwhile I shall carry on regardless.
I do hope that your journey is smoother than mine and littlewren’s.
Oh and incidentally I have it in writing that my apparent lack of education could be a cause of my tremor.
Who knew that being a little problematic with fractions could be so serious?
Thankfully though decimalisation has saved the day.
Tommy 
™
Hey @T1
It’s ridiculous, I’m sorry you’ve had diagnosis issues too.
For me, I’m only now (after a few years of symptoms) in the hands of a neurological consultant who appears to want to get some answers for me, so we know how to move forward with treatment. He’s incredibly supportive, I’m very lucky. He said he suspects Parkinson’s but want a DATScan.
I can only tell you, that for whatever reason, I’m looking for a diagnosis- whether it’s PD or FMD- so we can get some treatment going, so that I can feel better. Finally. Fed up with feeling slow, useless and in pain (mostly lower back and left foot atm 
)
You are right T1, not much really known about FMD.
Hi @DT.
I hope you get a definitive answer soon.
I’m afraid they don’t seem to understand why we would want such a thing.
Well here’s the thing, a gp referral alone is hard enough to achieve and all we want is for the consultant to remember the deal, we bring the condition and they diagnose & prescribe the treatment at least that’s what I understood when I paid my taxes for 40 years.
Maybe too much to ask?.
Anyway I hope that is a picture of your dog at the top otherwise you may have more problems than you thought.
Nice dog though, I have a 14 year old spaniel and here he is.
Tommy
™
Thanks @T1, I hope so too. Friday will be a step in the right direction… I’ve got an appointment with my nice consultant only the following week to discuss results, so not much longer hopefully.
If only my symptoms were limited to big ears…
that’s Bella, my french bulldog, she’s 5. My best friend. Your four legged friend is a beaut!
Thank you for taking the time to reply… lovely, supportive people on here.
DT
Hi @Littlewren
Feeling your frustration about diagnosis or lack of one to be more exact.
I’ve been 3 years with severe right leg tremor and useless left hand not to mention the Insomnia.
And because we naturally gravitate to Dr Google due to lack of information from our consultant they infer that we somehow want to have a serious condition (really) when all we want is a definitive diagnosis instead of the uncertainty that we currently live with.
I have just completed an 8 week mindfulness course of which I was extremely sceptical.
But I have managed to cherry pick some of the best meditation bits and I am really surprised at how much I can use it to my advantage.
Of course it does nothing for my symptoms but has been useful in allowing me to accept the fact that I may have to wait for a long time yet for any clarification.
I’m also a full time carer for my wife which throws a little more into the mix but however I can strongly recommend the course as I have found it to be a handy tool to ward off the frustration.
Hope you get some clarity soon.
Tommy ™
Hello DT
Well it is in fact still ongoing!! - I had a DAT scan which showed the decline in dopamine uptake, and the diagnosis after that was Parkinson’s. But it took a strange route, just as yours has. I already had a diagnosis of Dystonia, at first only in the eyelids (so I could not open my eyes) - then that started to spread, showing up in my toes (acting on their own). This led to the search for Parkinson’s, but there is also something called Generalised Dystonia with parkinsonisms, looks like that’s got my name on it. But as I said, whatever we call it, anxiety certainly makes it worse - note the times the tremor comes on!
Morning @Tamsin
Wow. You’d have thought that the symptoms and DATScan would have confirmed a definitive diagnosis of PD? But I have realised that it’s a minefield, there are so many variations. Having said that, it seems some neurologists are more certain when diagnosing than others. At the end of day, it’s about treatment to feel as well as we can be - but there needs to be a diagnosis as much as there can be.
The tremors are most definitely worse of under pressure, or if stressed. Even a stressful /full on conversation makes it worse!
It’s more predominant in right arm but also in left and I’ve also got a terrible internal shake
Trying to keep positive. Hope you are too
For anyone interested in functional neurological disorder (FND) and more specifically functional movement disorder (FMD), Prof Jon Stone up in Edinburgh is the go to academic…however, he wrote a paper a few years back that had a specific focus on misdiagnosis of these types of conditions, with specific emphasis on neurologists NOT missing organic disease in a rush to diagnose something on the functional pathway. This paper for me is really interesting but sadly contains a few niggly pitfalls that once again place the patient in a less than flattering light if one considers the wider picture - for example, the patient who attends clinic on their own is more likely to have a functional disorder or even more bizarre is the person who perhaps knows that one of their symptoms might be attributed to organic disease (e.g. no arm swing) similarly will be more likely to have a functional disorder. This type of comment, particularly the attending on your own completely ignores the social factors surrounding the reasons for attending alone and even though there may be a correlation, you are taught in any basic stats course that correlation often has nothing to do with causation…tempting to think so and easy to see what we want in the face of ‘proof’. Also, this paper stresses that people with organic disease are highly likely to present with functional issues alongside - Jon Stone basically advises that if in doubt, give two diagnoses…doesnt help of course with PD that it is still diagnosed on the basis of clinical signs and symptoms, arbitrated by the clinician…if this was able to be done objectively, I reckon the posts on this forum and elsewhere would be dramatically reduced! Even a Datscan should only be used to support a diagnosis of PD in the presence of obvious signs of reduced dopamine activity/production, as far as I understand, a ‘negative’ Datscan is nothing to do with not having PD…on the whole medics love black and white, cut and dried textbook presentations of symptoms, they have this drilled into them from the start as the grey, less defined or alternative explanations are challenging and often life-threatening to treat and manage…but in looking for the dominant signs and symptoms often dupes them into believing there is an absolute importance in ticking boxes - life ain’t always that straightforward!
I’m with various other people in that I’m taking some sort of weird comfort (if you can call it that) in if I have further organic disease (on top of my already diagnosed organic disease that behaved well enough to show itself on objective markers of outcome 
) that it will all be evident in ‘the end’ - which brings me to my final point that the only definitive diagnosis for PD can only emerge when the person isn’t around to receive it…
Keep strong everyone (sorry if I’ve hijacked the thread a little)
Not hijacked at all
Thanks @Littlewren that’s really interesting stuff. I think I’m possibly being a bit impatient in wanting answers… the multiple suggested diagnoses from the professionals has been varied which I think has fuelled the need to know, so we can do something about it!
DATScan on Friday, we’ll see what happens
Hi @Littlewren
Like @DT I don’t feel any hijacking on your part in fact quite the opposite.
I have found your posts very useful and informative.
Keep Searching friend.
Tommy ™
Hi @T1,
Wow, your experience with the neurologist you mentioned is shocking! I think you’ve made a wise choice to seek a new consultant and if you need any support on this, please remember that you can always give our helpline (I’m sure you know the number by now )
Best wishes,
Reah
Thanks @Reah
I was sent a letter informing me that the Neurological department were going to discharge me and a final appointment for my original neurologist to implement this decision.
Bearing in mind that he originally diagnosed pd with clonus hence the reason I joined this forum.
I did however manage to get the point across that although the two consultants and the gp as well as myself don’t agree with the diagnosis and that if they were indeed correct with the fnd diagnosis.
We all agree that the problem is Neurological and therefore still requires the appropriate treatment and should not simply be dismissed as a non fashionable condition.
The outcome was that the original consultant agreed to keep me under the care of the department.
Thanks for caring.
Tommy ™