Potential PD & Early Onset

Hello All,

Just thought id share an introduction. Also, im really at the moment just looking to see if my symptoms so far ring true, or similar with anybody. I have just been referred to Neurologist by my GP, appointment is a little over 10 days time. Im in a fortunate position to be able to go private, which i am thankful for after seeing some of the stories on here around the NHS route.

I wont muddy the waters to much, but im 37 and otherwise fit and healthy. Except for having a few spinal surgeries 10 years or so ago, which left me with some nerve damage and lower back pain, but managed fine by medication. And more recently, increasing over the past 6 months bouts of Inappropriate Sinus Tachycardia, with chest pain and shortness of breath. Had emergency Angiogram 2 weeks ago, arteries are all clear. So now they are looking at electrical signal issue, but anyway, theory at the moment is this is unrelated (except i have read, that there have been causes of PD internal tremors affecting the Sinus node and causing Tachycardia, so who knows…)

Point of the above, is, during the various hospital and GP visits, reviewing the potential heart issue - it was flagged up by my GP, and consultant, they had noticed some Parkinson’s symptoms, as well as when they delved into my history, especially over the past year, id been noticing quite a lot of changes in me, which i had put down to other factors. Long story short, GP wanted me to go asap to movement specialist neurologist to be checked for Parkinson’s.

So, this arrives to where i am now. Ill go, and see how things turn out. If it is - ok, ill deal with that, im generally overly positive much to the annoyance of my partner and work colleagues - don’t get me wrong, im aware PD is a terrible disease, but equally, ill make the best of life however i can.

So main reason for this post is to see if any of my symptoms resonate with others. Or, if others have been in a similar position, and it turned out not to be PD, it was some other cause, which i think is equally as important.

All of the below are essentially over the last year, with some more recently, with slightly different progression rates in each:

  1. Resting tremor in my right hand + shaking right arm. Also To a lesser degree but noticeable the same in the left.

  2. Jerky movements of the right wrist, so if rotate my wrist slowly, there are points where it has quite a violent tremor + noticing to lesser degree some jerky movements every now and then in other locations.

  3. Dropping a lot of items, where i either misjudge my fingers closing, or they work a bit slower, or my grip weakens + much more clumsy with balance issues.

  4. My right hand seizes up with any repetitive movement’s. If i do that bradykineasia test of finger tapping, or palm clench/open - it visibly slows down quite quickly, until i can hardly move the hand

  5. Memory is getting worse + im finding descriptive words, or names aren’t there sometimes when i need them, and takes a few seconds to think of the word.

  6. Attention span, and ability to sit and do written work at the computer, or organise time is starting to be a bit of a pain and take longer to think things through and plan work (luckily im the CEO/owner of my company, so, im thankful, for the time being of being secure-ish in work)

  7. Im often fatigued, not hugely though, just that i dont feel rested. More and more vivid dreams, sleep talking, and i wake up for several half hour blocks each night + also need to pee quite a few times during the night.

  8. Quite a lot of aches and pains, but i had always put these down to the back issue. But noticing now these are more whole body type, rather than lower back. Bear in mind due to my back im on hi dose synthetic opiates, which mask a LOT of general pain, so would hate to think what its like without them.

  9. Reasonably rigid, felt like my body has aged a fair bit in the past 12 months, much more groaning when i need to bend down or stand up, bit more effort required to do things or get my body moving.

SO yeah, just a short list - i realise now, i must have just been putting all these things to the back of my mind. I work usually 14 hour days, 7 days a week, and am always busy, so i can have a bad habit of neglecting myself sometimes. If it turns out PD, ill of course be re-evaluating priorities of what’s important now, whilst taking into account how long i may have left to work etc.

So yes, hopefully it isnt PD - but when i told my partner id been referred to the Neuroligist, she burst into tears a bit later after she had looked up PD, as she said i was text book.

Anyway, thanks for reading. Hopefully im not here for the long run (no offence)! But if i am, it seems a good place for support.

Ryan

1 Like

Hi @Neutrino and welcome to our forum. This must be a very worrying time for you and I do hope you find some answers soon. Many of our members have been through the same period of uncertainty that you are now going through, and I’m sure they will be along to add their thoughts and support soon. In the meantime, you may be interested in taking a look through our website at www.parkinsons.org.uk and exploring the pages at your leisure.

We also have a helpline with a team of advisers who can answer any questions or concerns you may have. Just give them a call on 0808 300 0303.

Best wishes,
Janice
Forum Moderation Team

@Neutrino hi Ryan and welcome to the forum.
Some of what you list does resonate with me. Like you I have a lower back issue and take synthetic opiates. Over a period from 1985 to 2015 my back condition or the pain continued to worsen and also spread to a more generalised pain symptons through out my body. My back condition has always been closely monitored. In 2014 to 15, I was working abroad a lot on a contract that involved lots of long flights on a regular basis. During this time I missed several orthopaedic appointments but this was all agreed with consultant as the job opportunity was a once in a lifetime opportunity.

In 2015 I noticed a distinct lump on left side of spine and booked an appoint, also had more pronounced tremors in my left hand, arm and leg plus back muscle spasms. I had been dx with rest leg syndrome in 2006. At that appointment the x-ray and MRI clearly showed my spine had started to curve and I had developed spinal stenosis. In discussing findings the consultant noticed some tremors and also some issues I was reporting made no clinical sense in relation to the spinal injury and newly discovered issue. I was referred to pain clinic and checked for rheumatoid arthritis which was negative.

2016 at my next check up with orthopaedic consultant, I saw a different one as the other one had moved away. During the examination he asked what seemed at the time some bizarre questions and ask me to perform some strange movements / test. At the end he said I am going to refer you to a colleague who is a neurologist. Appointment came and I was dx with parkinsons.

Hoping for you it is not mr parky as we call it in my family, however if it is you have found already a good place to be. Lots of lived experiences and good suggestions in coping. My biggest piece of advice at the moment is stop looking it up or if like me you still want to, use PUK website as there is lots of valuable advice and guidance.

How long can you carry on working, well as you will learn with mr parky though some people are similar in symptoms no 2 individuals are overall affected the same. In my case I have continued working and I still am, though more due to my spinal conditions getting worse, I am now re-evaluating if I am going to carry on working at 58 years young.

Wishing you the best for your upcoming appointment :sunglasses:

Hello Ryan

I went private as my GP was totally useless and kept dismissing my symptoms but it sounds like you have a good GP there. As soon as I realised I wasn’t swinging my left arm when walking I had a strong suspicion it was PD. The neurologist will be very good at just seeing your tremor and the way you walk and have a good idea on if it’s Parkinson’s. I got a DATscan which confirmed diagnosis. I know it’s stressful waiting on results, it’s probably the worst bit not having a diagnosis, but let us know how you get on when you see the neurologist.

Thanks both for the replies.

Very similar there on the unrelated items leading up to some symptoms being noticed for sure. I also travel a lot for work. Luckily though the company is evolving where within a few years i may be able to step rite back, and re-prioritise. But im not one for sitting idle. Much to the annoyance of my partner, i generally always have to be doing something!

Due to my academic background and current work, I’m always very analytical, and always like to have all the information available to me. But do realise its a minefield out there, so take everything with a pinch of salt until have either fact checked, or got other peoples opinion on a bit of info.

Yes, my GP has been great, both for this, and also the prior heart issues. So do feel lucky in that respect. She gave me her shortlist of 3 neurologists to pick from, and all where specialists in PD, the one i chose is this regions clinical lead - so hopefully it should be a smooth yes/no situation. But aware, things aren’t always that straightforward.

I also forgot to add to the list. My sense of smell has pretty much disappeared. I can still smell, but very weak, really have to get close or take a big breath in through the nose to smell. Eyes are always very bloodshot, as have noticed blinking has been slowing down. And yes, the right arm, i think, swings about half the rate the right does, and less amplitude.

The one thing i am keen on finding out though, is if there is a relation between the fast heart rate/palpitation episodes and PD - not that i want a diagnosis of PD, but if it is, at least if im not dealing with two separate/serious conditions, its a bonus. Have read a few papers where there are clear examples of this.

I finished last week my Holter monitor study at home, so that’s being analysed now, and see that consultant next week to see what was picked up on the ECG - as have seen quite a few examples of arterial fibrillation caused by PD - so if that’s marked on there, and then a PD diagnosis, in theory it could be ticked off against it. Both consultants appointments are at the same hospital on the same day, talk about timing!

GP has also organised a ultrasound of my bladder, to see if any other cause like a weak bladder, or other known issues to explain the frequent urination, especially at night - that’s a few weeks later as on the NHS, which is definitely understandable at the moment.

Im not sure if it is the correct way to proceed - but both me and my partner are essentially convinced it is PD - so, going into the diagnosis process, if it is, we have already started on the journey of coming to terms with it, and if it isnt, then great - although, there will then be questions of what is causing these symptoms.

Catch 22!

Hi Neutrino - It really isn’t the end of the world if you do get a PD diagnosis. (Says she 8+ years down the line). At least you will start on some drug relief which should help the symptoms you list. Give each sufficient time to work and if they don’t, keep going until you find one that does. You are obviously active and sound fairly healthy so just keep that up - it will help you deal with this. List your questions for the Neurologist so that you remeber to ask everything you want to know. If there is a local Young Onset group join up and get involved in Research to help you understand your PD. Everyone’s symptoms are different so there’s a lot to take in. Good luck.

Welcome @Neutrino. Afraid to say those symptoms do sound like PD to me (although I am no expert). I have quite a few of them myself - diagnosed at 49 about 18 months ago. How’s your handwriting? Mine is dreadful. Exercise and keeping fit seems to be key so that’s what I focus on.

There are people who have had PD for decades and it doesn’t impact their life much. For me, PD is just a small part of who I am. It’s not all of me. And long may that continue. Good luck. Let us know what happens.

Thanks both for the replies.

In answer to the question, my handwriting has always been terrible :slight_smile: but yes, distinctly worse. Its a weird one, the more into a sentence i write the worse its gets, i can feel my hand movements getting smaller and slower. Im also noticing it at work with screwdrivers and other hand tools. A few repetitions, and everything is slowing down and then locking up.

Agree completely though. Will take it all as it comes, and only alter, or change the way i do things as the time comes. Definitely will be looking for local groups, and getting involved in research, without question.