Me, my prognosis, how long does it take and who do I trust.

Hi, my name is Dan.

I was diagnosed with Dystonia in 2018, since then (looking back) I have had lots of other symptoms gradually getting worse over the last few years, but it’s only been the last 10 months that I went to the GP and have been going through a pretty tough time since.
I am only 39 (40 this year). I have a distinctive and now permanent tremor of my right arm/hand, jerks through my shoulders, my walking pace has slowed significantly and my gait of very short (2 years ago I was running marathons) I struggle walking round the block and get breathless easily. I am having pains in my head on the right side, twitching of my eyelid, spasms in lower back muscles and calves regularly, my speech is become worse and memory problems are also deteriorating and recently have noticed having problems in the bedroom.
My GP has been great, she has given me medications and referred to the neurologist. Before yesterday I had been in the room for a total of 10 minutes if that. But yesterday following a DatScan that was clear, he tells me I have functional neurological disorder.
Last week I went to a private neurologist who is a speacialist in movement disorders and he has asked my GP to refer me to him as he thinks there is organic problems and thinks it is more that likely a Parkinsonism and is willing to treat it that way.
My dad has Dystonia and my uncle has Parkinson’s.
I am struggling to work from home and haven’t drove for some time as I don’t feel safe my my slow movements and tremors.
My wife has been amazing throughout, and being a nurse has been fantastic at helping me throughout, but it’s it’s such a stressful time for everyone, following yesterday’s discussion was a bit of a let down, and we have no confidence in the neurologist at the hospital.
How much should I be pushing for the GP to refer me to the private consultant who has more experience in this area and has a very different opinion of my symptoms and possible diagnosis.
It’s obviously not something I want, but if it is Parkinson’s I am diagnosed I feel we can then get a plan in place and start to move forward with it. At the moment I feel the consultant at my local hospital really doesn’t care, and is not interested in getting to the bottom of my issues.
I have dragged on a bit but just wanted to get some opinions on how long this might take? am I doing the right thing trying a different consultant with more experience in these specific issues? I am only young and this is having such a big impact on my life I just want to know what direction my life is going in for my sake, my wife, my kids, work etc. Thanks in advance for any replies.

Hi @Dclarke31, :wave:

A warm welcome to the forum. :slightly_smiling_face:

Considering what you’ve shared in your post, it’s understandable why you might be feeling concerned about the future and I’m sorrry to hear that you haven’t had the best experience with the consultant at your local hospital. However, you’ve come to the right place for information and support.

The time it takes to get a diagnosis can vary from person to person. Some people may receive a diagnosis of Parkinson’s quite quickly, but for others it may be a long process. This can be due to a number of things, including your medical history, your age and what symptoms you have.

Your specialist may wish to rule out other causes of your symptoms first and see how you respond to treatment. This may take some time as there is currently no definitive test for Parkinson’s.

How you respond to treatment may help your specialist make a diagnosis. Keeping a diary or record of your symptoms will give the specialist more information to guide their decision.

If you’re waiting for a diagnosis and have any questions, you can call our helpline on 0808 800 0303.

I hope you find this information helpful.

Best wishes.
Forum Community Manager

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Thanks for your message.

I completely understand it takes time to diagnose these things and there is no clear test.
I had an MRI, then went to see the consultant, and he basically said if I was older he would diagnose Parkinson’s with the symptoms I have, but because of my age he is dismissing it. He also said there would be nothing on the MRI even though he hadn’t seen the images yet. I just don’t feel like the consultant knows or cares so is just moving me on!

And it’s very confusing when I went to a private consultant who is a specialist in movement disorders and wants me to go to his clinic on the NHS and redo the scans because there are different ways of looking at the scans, and even mentioned genetic testing due to the family history. This is what I am pushing for at the minute. At least he seems to care and listen so will help get to the bottom of what is going on, rather than dismissing me because he is not sure.
Thanks, hopefully have some better news soon, or at least a clear diagnosis so I can start to move forward with my life, everything just seems on hold even more so at the minute because of all the waiting to see what is going to happen next.

Hi I would push to be referred to who is your most professional but be avised it won’t be cheap.

Hi Dan
I was diagnosed with PD in 2016.
For about 10 months I have been having the same problems as you. I went to see my GP and also had a few home visits and phone calls from different departments eg physio and speech and language therapist. Then everything stopped but my symptoms didn’t. So I contacted neurology department and requested an appointment.
Also like you I was quite active and did the parkrun every week a few 10ks, boxing, the gym and swimming. Now my posture is so bad I have to hold my head up with my hand.

I rang for an appointment in August, had a phone consultation in October, a face to face appointment in January and a referral to Oxford for April.

At my face to face appointment I was diagnosed with antecollis which is dystonia (posture) and dysphagia (swallowing). My speech is also affected I have decided to stop driving as I hadn’t driven for quite a while. It broke my heart because I feel like everything is being taken away from me. But I’m also learning to think this is where I am now and try and to do something …I walk several times a week, it’s slow but it’s something. I also do a lot of stretching.

Yes go to your Dr and ask him refer you to see the private consultant under the NHS. Yes you are doing the right thing.

Good luck

Hi Dan
I’m Tommy and I fully understand your frustration ,now I am not going to add to your situation by saying this happened to me blah,blah .You don’t mention if your consultant is trying any Parkinson’s medication before seeing you again and I think that would be the normal route to take as Reah has already stated there is no definitive test at this time for a Parkinson’s diagnosis and to be told if you were older he would be likely to give a pd diagnosis is extremely puzzling .

Has this particular consultant never heard of young onset Parkinson’s and I wonder what medication your gp prescribed and if they could have affected the DATSCAN result ? .
Now with the private diagnosis I’ll hazard a guess that you feel like you’re in limbo and that FND is actually just an umbrella term for @@@##@@ no diagnosis while your words get twisted into [you would rather have a serious illness ] when all you seek is answers and believe me the question will come up" what disease would you prefer" this very question was put to me by an Oxford consultant so i went home ,calmed down for a few days and then put my thoughts in writing and sacked the guy to the amusement and agreement of my gp.
However with the current situation i have not seen a neurologist for two years and it’s doubtful this year’s appointment will take place so like you i have a private appointment in a few days .

If you are on Facebook look up a group called focused friends run by a few yopd people including a young man called Deano Parsons who was in his 20s when his symptoms surfaced and waited more than 20 years for his diagnosis Dean is a writer and psychotherapist also very much a gentleman who would gladly share any advice gained from his own experiences .
Good Luck with your journey.
stay safe and calmly prepared for the long haul.


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Hi there Dan
Could I also ask you to read the thread called (maybe misdiagnosis) I think you’ll find it interesting and many posts comparable to your own.
Tommy :pill::pill::pill:

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Hi Dan

Your story sounds almost identical to mine. I was slightly older I was 45 when it all started and the symptoms developed pretty rapidly. I unlike yourself was given a diagnosis of parkinsons quickly. As a nurse I had a fair idea this was what it was
I no longer work. I think you need to push for a proper diagnosis to get the right treatment. Good luck

@Dclarke31 I am fairly new to this world too, diagnosed in 2019 at 49. No advice from me, sorry. But plenty of sympathy. Sounds like you have your head screwed on and some solid family support. Stay strong. :muscle:

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Hi Dan, your experience sounds much like my husbands, the first neurologist he saw was very offhand and didn’t give us much confidence in him. We asked, after a few months for a referral to another neurologist, also NHS and the second one we saw was much better, it didn’t make any difference to the diagnosis but at least he talked to us and explained what treatment my husband could try and organised a specialist Parkinsons nurse. The nurse organised physio, speach therapy and for someone to assess what aids my husband needed. What must be nearly 4 years on the diagnosis still is not definite as the last letter from the nurse to the GP says
‘date of PD diagnosis 2017 - probable parkisonism? Vascular? Parkinsons plus - Pos - DAT ASPH.’
what are we supposed to make of that! What I am saying is that if you get a definitive diagnosis then you are lucky. My husband has reached the point where he is not bothered about the actual diagnosis but is happy that he is getting all the help he can and that is the important thing. Before you start paying privately ask for a referral to a different NHS neurologist.

Thank you all for your messages and support, it does make me feel a little better, and that I am doing the right thing.
My GP has now dismissed the letters from the neurologist at Northampton and is referring me to the movement specialist I saw in Leicester so I feel I will get the right information from him. As said above, even if it is not a diagnosis for some time, at least I feel I will get the right advice and medication to help move forward with it.
I will definitely have a look at the recommended sites to gain some more knowledge and understanding.
I think the DatScan being normal is not unusual, and the private neurologist said there are different ways of looking at the scan and different algorithms that are used to determine PD, and if it’s not looked at correctly can be easily missed, so hopefully going forward I will get some answers.
Thank you all I really appreciate your kind words and all the best to all of you for whatever may come in the future.