Hello and just want to say what a great forum this is - i’ve already spent a long time reading before signing up.
I must stress I am just in the diagnosis stage with nothing confirmed yet.
I guess you all know why I am here - after 4 Neurologists (2 private) Neurological Physio and a few Osteo’s the list of my symptoms seems to closely match a potential Parkinsons. Perhaps my EMG on friday will confirm it.
Basically 48y/o, start of the year I woke up with tremors in arms , legs and trunk, but only under load, and when i try and move all limbs the movement is not smooth - it judders. as I went through a head CT and head MRI for a stroke (thanks to the GP) then MRIs on neck and back (private) and were all clear, and 2 private Neuro’s who initially diagnosed Essential Tremor, 2 different NHS Neuro’s the first diagnosed Essential Tremor - but then I developed more symptoms…
-random muscle twitches over my body, any muscle any time
-hand and arm stiffness
-calf twitches
-fine control issues
-a “wobble” in my hands when i move my arms at the elbow only at a certain point in the movement
-tremors coming on in more parts of the body, like if I press my legs together they both tremor, press my head against something, neck tremors…
leaving a few puzzled faces.
2 neuros have done a full work up on me in the initial stages, and nothing had been said , but no work up since the above symptoms all come on over the past 8 months - apart from Neurology requesting an EMG - when I asked what all this was, she said I have “physiological tremors”, but looking that up , i’m unsure how they are different from “action” tremors, and I have no conditions usually listed as the reason for those types of tremors (medication, drugs etc)
So all the above has lead me here. I’m assuming Parkinsons can be seen on an EMG? and not MRI’s looking for strokes - and i guess although this is "a strange one " as one Neuro told me, could Parkinsons present like this? I guess nothing is impossible.
Will donate to the organisation to the upkeep of this great resource. all the best.
Hello Worriedman73 and welcome to the forum.
That is quite some story you have there which seems to have got all the medics perplexed.
I am very sorry to tell you that I don’t think I am able to offer anything that may help you. I do wish it were otherwise, but I am no doctor and your circumstances hugely complex and I believe it would be remiss of me to comment. You might however consider speaking to the helpdesk, they may be able to help you or perhaps there is another forum member who is better placed than I to offer some advice.
That said, I wanted to say that you are welcome on the forum any time you need some support, a sounding board, a listening ear or anything else. We can at least do that for you while the wait for the root cause of your problems goes on. Let’s hope that is found soon.
I wish you well and let us know how you are getting on.
Tot
Hi Worriedman73,
First of all, welcome to our lovely forum community. As Tot has aptly demonstrated, it’s a welcoming space rich with wise and supporting people. We will always encourage you to report any and all medical questions to your Parkinson’s/medical team, but you are also invited to speak to our amazing adviser team at our helpline. They have a raft of resources available to share, and are always happy to help. You can reach them at 0808 800 0303, Monday to Friday, 9am to 6pm, and Saturdays from 10am to 2pm.
You may also wish to have a look at our website, which has loads of information, including archived forum discussions, around diagnosis. This page might be a good place to start.
Please accept our best wishes and a warm welcome – and thank you so much for your support!
Jason
Moderation Team
I shall take the advice and give the helpline a call on Monday to sound out a few things that dont make sense to me and just keep going down rabbit holes with Dr Google.
just to add, I had my EMG on friday and the consultant there and then ruled out MND , but said EMG doesnt pick up Parkinsons - but he also said my presentation was very unusual and didnt sound like the normal Parkinsons route (which i read on this very helpful website!) he will report back to my Neurologist and see the route to be taken.
And , After reading up about tremors the NHS Neurologist said i have enhanced physiological tremors - however that doesnt quite fit with my tremors, and i feel they are more Isometric but I struggle myself to figure out the difference between the two.
Welcome @worriedman73. I was diagnosed with PD in 2019 at 49. Like @Tot I am no doctor either, but wanted to ask you to expand on:
e.g. how’s your handwriting? Control of a computer mouse? Typing speed?
For me the answers are tiny and spidery; had to change to using the mouse with my left hand (I am right handed and the Parkinsons affects the right side); and about a quarter of what it was.
Hi it replied to another new poster,read my reply to spm. I would go back to gp and ask to start on co-careldopa my gp started me on it immediately after scan. In her words ‘parkinsons is difficult to diagnose and starting meds if it improves symptoms, likely to be parkinsons’ as i said to spm by varying dosages you can get finer control. I have a good improvement and am on holiday, on my own, in a hilltop village in Italy . Been here almost a week and apart from tiredness (normal for me now) I’ve been fine.
My partner presented with “unusual” symptoms at a Bupa scan paid for by an employer. Consultant was very interested: it’s not necessarily a bad thing to present in a way they find a bit of a mystery, sometimes.
However, once he had diagnosed PD through a DATscan, he seemed to lose interest, and we ended up changing consultant for better treatment on the NHS because Bupa stopped when my partner grew too ill to work.
I wish you the best of luck in finding out what this is, and as long as you can retain a medic’s interest, you are in with a chance of getting decent treatment.
You might want to consult a Movement Disorder Specialist if your current neurologist is just a general neurologist. If you are anywhere near London, you could ask your GP to be referred to the National Hospital for Neurology and Neurosurgery, Queens Square, London. It is a centre of excellence. The other thing you can do is ask for a DatScan which can confirm PD.
DaTscans is show parkinsonism - which is not necessarily (degenerative) Parkinson’s Disease. I was very lucky to be diagnosed with (& treated for) Spontaneous Intracranial Hypotension (a spinal CSF leak) before I had a positive DaTscan - because this result might have caused confusion and obscured what my underlying problem was.
. Been here almost a week and apart from tiredness (normal for me now) I’ve been fine.