Not diagnosed yet but waiting

Hi there everyone my name is Alan and I have yet to be diagnosed but I’ll try and keep this short. I’m almost 62 and my problems started about 5 years ago with just getting a bit dizzy and feeling as if I was going to black out for no reason what so ever, this happened roughly every 3 to 4 months. About 3 years ago I woke up and couldn’t see properly out of my right eye just the peripheral and it lasted for a couple of days at the same time my right leg felt a kind of weird like it was numb and it has stayed the same ever since. I went to the doctor and he thought I had a stroke so he sent me for an MRI but all was well. So 2 years ago I was at a wedding and my right side went all weird and tingly , vision was a bit off as well but I thought too much drink was to blame and shrugged it off. I woke the next morning and I couldn’t stop my right arm from twitching and my right leg was doing a bit of weird movements as well, so off to the doctor I went again and they promptly sent me off to see a Neurologist who immediately said I had Parkinson’s disease, I had a DaTSCAN within about 6 weeks and of course about another 6 weeks later I had the results which came back negative so the Neurologist said I hadn’t got Parkinsons Disease so then I had a EEG another MRI some other thing to do with muscles which involved sticking great big needles into my arm and sending electric shocks through them and all came back negative. I am now waiting for another DaTSCAN which has been put on hold because of Covid 19. Since then I have become weaker and unsteady on my feet especially when I turn, my arm and leg are extremely restless, I get arm, leg and full body tremors which get worse when I’m tired, I can’t do repetitive tasks because I get soo knackered, when I’m walking all of a sudden I feel like I’m in a swimming pool, trying to get a key into a door or lift a cup to my mouth is just weird at times because it just seems to stop before I complete the task. My thinking has gone out the window and trying to plan things is a nightmare. The list is endless and my boss just doesn’t know what to do but he’s very supportive. I’m a Lorry driver by the way and there are times I’m thinking should I really be doing what I’m doing but I’m fine when I’m driving, I just nap when I’m feeling tired.
Sorry for going on and thanks for reading this if it makes any sense, what do any of you think, have I possibly got Parkinsons, what if the second DaTScan comes back negative any input would be great from you all please and thanks again

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Hi @Alanc579,

Welcome to the forum, I’m sure our members will be along to give you their experiences, hopefully your future tests might give you some answers.

In the meantime, have a look at some of our resources:

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Tash - Moderation Team

Hi Alan,

I can see that you’re in a really tricky situation because you don’t know what your symptoms are being caused by so it’s hard to know what actions to take and I know from personal experience how stressful the process of being diagnosed with a neurological condition is.

I was told that I might have Parkinson’s late in September but was not given a definite diagnosis until the following July. I didn’t know what to do with the information that I ‘might’ have Parkinson’s Disease practically or emotionally and although my route through to diagnosis was straightforward and I personally can’t fault the Health Service because the treatment I received was really good, it was still an awfully long time to exist with the dread of a confirmed diagnosis of Parkinson’s hanging over my head.

Like you, I had an MRI scan and then a dat-scan but combined with the symptoms I was experiencing, my results supported the initial diagnosis. My symptoms at the time were: right sided tremor, foot dystonia, some degree of rigidity and I was also struggling to write/ type/ brush my teeth and get my right arm in my sleeve.

My experience of diagnosis was very straightforward but I know that lots of people have a long and complex journey before they get an answer to explain what can often be a complicated set of symptoms.

I didn’t seek support when Parkinson’s was first suggested but I wish I had thought to do so, or even realised that I could, because I think I would have dealt with things better if I had so I think it’s great that you’re already on the forum and seeking advice and information :slight_smile:

I’m clearly no expert :-S, but I think it would be worth reading through the DVLA guidelines on driving with Parkinson’s just so that you know your position should this be the final diagnosis. From what you say in your post, you are already worried about driving so just thinking about your job, would it be worth discussing driving at the present time with your GP bearing in mind the symptoms you’re experiencing and the investigations underway? This, however, could possibly result in being advised not to drive for the time being which I can see would be extremely difficult. I think at the very least, however, it would be worth phoning up the helpline to discuss this as you could get some informed advice and possibly some pointers as to where to find more information about your situation at work.

When I was diagnosed with Parkinson’s, I thought my life was over. Eight years down the line and I continue to occasionally grieve for the future that I wanted and life is also one of constant adjustments so I can honestly say that I’m still not enamoured with the condition, but on the other hand, I still live very independently and do things that I enjoy and exercise regularly. I have also met some fascinating and inspiring people and when I’m not being grumpy, I can even acknowledge that I now appreciate things that I never appreciated before.

I will keep my fingers crossed that your second Dat-scan goes ahead soon and you get some answers. Please do post again with any updates. J :slight_smile:

Hi Jackson thanks for your kind and supportive words, I forgot to mention that the dvla have already been told that I have a Neurological condition and have only issued me with a 3 year licence. I suppose I should be thankful that I’m not on any medication yet otherwise things may be a bit different. I also forgot to mention that I get the occasional bouts of dystonia in my right leg, right upper arm and wrist, right lower leg and foot and the weirdest one is on the right side of My throat, larynx. I now also get my right upper eyelid flickering on a daily basis, it can happen at any time of the day or night. I act out my dreams quite a lot to and they are quite violent actions as well, funny if they weren’t quite serious, recently I tried to kick a grenade out of the way but it was the poor wife who was getting kicked and then another one was when I grabbed someone and started to punch them, fortunately it was the bedside table that got it and not the wife but my little finger was almost broke, oh the pain ha ha. Sleeping can be a problem, waking every hour, half hour. Out walking with the dog can have its moments as well, I came to a kerb and just froze, I honestly didn’t have a clue how I was going to negotiate getting down the kerb, I ended up turning side ways and stepping off it, I got some strange looks but I just shrugged and laughed it off to the bemusement of the onlookers and the dog. I know I’m going on a bit here but it’s just good to get it out because trying to explain to work colleagues when I suddenly lose balance and look drunk is a challenge in itself. I keep getting called a miserable git from family and friends lately because of my now masked face apparently but personally I think I’ve always looked that way. I could go on and on and it looks as if I am but seriously I just wish I had a diagnosis of some sort so I can move on and hopefully this forum will be a start. Thanks for listening Jackson :+1:

Hi all this past few days I have just been noticing that when I walk it’s like someone is trying to push my right leg out to the side and I can’t control it Along with the unsteadiness I already have it’s a right annoying pain. Also flat ground I find is good and going up or down any sort of incline etc just renders me useless and very weak. Has anyone else had these issues please.
I have a phone consultation with my Neurologist on the 25th May, that’ll be good I can hardly speak on the phone at the best of times

Hi all, well I had my phone consultation with my Neurologist yesterday, he asked about my symptoms again and any changes, additions etc so the outcome is I’m going for another DaTSCAN and hopefully I get a result out of that if you know what I mean.

Briefly scanning your list of symptoms, I find myself thinking…surely this man would benefit from seeing whether Levidopa helps his condition…At least it’s might answer some fundamental questions on the subject of dopamine and whether you may be critically short of this essential chemical…I do recommend reading Brain Storms, by Jon Palfreman…the best Parkinson’s book I’ve read

Thank you William, I will certainly have a look at the book, I also have now discovered that the twitching in my right eye lid is actually a tremor in my eye ball itself and it’s not not just coming and going it’s permanent and really annoying, it’s taking longer to read a page now but I’ll persevere. I never thought I’d pray for a diagnosis of Parkinson’s disease but there I go ever the optimist ha ha

Alan…The book I referred to is eminently readable, taking you through the history of identification and treatment of Parkies. I wish is had been written last year, as it is some 5 yrs out of date…unfortunately, in being 5 years out of date, it sadly , to my mind, seems still to be up to date, in that I am not aware of any break through that post dates the discussions. Jon Palfreman expressed optimism for a couple of research topics that were current at time of publication…Unfortunately, a quick search of the internet will show you that successs was not achieved (Glial cell + Bacteriophage associated trials)

Well folks because of this Coronavirus I’m still waiting for my second DatScan, I’ve had other blood tests etc but nothing has been found. I’ve given up my job as an HGV driver and am now loading trucks instead of driving them. What I have noticed though that because of all the physical activity I’m involved in ie, pulling, pushing, lifting etc besides the unsteadiness I’m feeling not so bad during the day for my duration at work but as soon as I stop for even a few minutes I seize up and it takes me ages to get back in the move again. When I’m at home especially at weekends I’m wrecked and can hardly move , turning over in bed is a nightmare. I have also noticed that tremors are not as frequent and symptoms are not as bad as before I started all the physical stuff at work. I suppose keeping active is the thing at the moment , I know I wouldn’t go to the gym so I guess I’m lucky I have a job that is very physically demanding. Thing is I’m 62 years old and just wondering if I’m doing too much and I’m soo looking forward to retirement. Any comments would be much appreciated as I’m still at my wits end waiting for a proper diagnosis,thanks all

Well I have had my second DatScan and the results have come back normal even though my symptoms have gotten worse. I’ve had to cut my hours at work down to four hours a day and even that’s a chore. I’m lucky I guess because it’s a physical job, a lot of pushing, pulling, stretching,twisting etc which is a good thing I suppose but the effort involved. My Neurologist wants to see me for another examination to hopefully give me a diagnosis of some sort. I have had every blood test under the sun mri’s you name it. I know it’s to discount other stuff but nothing is found so just what can it be. All the cramps, slow movement , jerks, stop start, unsteadiness,flickering eye, unable to think clearly, can’t follow a simple conversation, dropping stuff, bumping into things, restless leg, I say leg, also it feels like I’m wearing a sock all the time on my right foot and now my right hand feels like it’s starting to wear a glove. This has been going on for the better part of 5 years I know some of you have been going for longer but if this isn’t Parkinson’s then what else can it be, please enlighten me. Friends and work colleagues look at me and think there’s nothing wrong, why can’t I just move quicker you see them looking at me,because on the outside I look ok except for the odd stumble and slurred speech. I just wish for a diagnosis of some sort. I mean 2 normal DatScans what’s that all about has anyone else had 2 and still been diagnosed with Parkinson’s, thanks for reading this

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It feels like I’m talking to myself at the moment but here goes. I have now seen my Neurologist and joy of all joys he says there is no evidence to suggest Parkinson’s just because the 2nd DatScan says normal again. All my symptoms suggest possible Parkinson’s or Some sort of Parkinsonism but my fantastic Neurologist says No Evidence. He is now sending me for a nerve test on my right foot that feels like there’s a crumpled up sock in it and suggesting possible Peripheral Neuropathy. Then he says if there’s no evidence again he’ll see me and then possibly send me for a second opinion. How long is this going to go on for, possibly another year just to get this bit done. I honestly felt he couldn’t wait to get rid of me, it was a Sunday appointment at 16:15, I was in for no more than 10 minutes, he asked me nothing and when I tried to tell him stuff he wasn’t listening, it was all about the evidence. What pissed me off even more was he beat me to the car park and drove off before I even got my car started. I must remember never to accept a weekend appointment and certainly not the last appointment of the day. It’s people like this that bleed the NHS dry maybe I’m wrong I hope so. I was told if I didn’t turn up it would cost the NHS £160, well I guess this Neurologist certainly got his moneys worth. So I guess it’s just another waiting game

I’m not sure when you wrote this because I don’t understand the date thing at the side of posts but you sound really fed up and I just wanted to let you know that I’ve read your posts.
It is soul destroying when you don’t feel that you’re being listened to and I can see that your situation is really tricky because you have long term debilitating symptoms but no diagnosis.
I have had the good fortune to have seen some very good consultants but I know that in this time-pressured world we live in they are not all as good at listening as they arguably should be.
I don’t know your situation in terms of work and pension but if you do have a workplace pension then it seems likely that any application for ill health retirement world necessitate medical evidence😕 however it may be worth looking into the scheme rules anyway (if you do have a workplace pension).
This is probably no help at all but have you looked for any support groups for people with undiagnosed illnesses? If there is a well setup and well-managed online community then it might be possible that somebody has some advice or insight that could be useful.
Take care. J

Hi I also feel as though my consultant did not listen to me I took a letter with me listing all of my symptoms and he didn’t even look at it . I have had symptoms for 4 years and iv only just been seen by a neurologist im having a Dat scan soon