Newly diagnosed as of Wednesday!


#1

Hi everyone.
After a bit of a wait I saw a consultant neurologist on Wednesday at Edinburgh Royal Infirmary.
I have probably had tremors for at least two years although to start with they only happened when I was particularly keyed up or nervous (having an argument with my mum about Brexit also sent my shakes through the roof!). I ignored them and when they got worse, tried to hide them. I promise you that when you’re speaking before a group (my Toastmasters club) you can’t hide them for long. A fellow club member emailed me to point out that my tremor was ‘the elephant in the room’ and that they were there to support me. It was such a relief to be open about it! I watched a video of myself trying to hide my shaky hand behind my back when speaking. Excruciating to watch.
Then my mum came to stay and she noticed my right hand shaking. “Go and get it checked out,” she said, “I’m sure it’s nothing.” Thanks Mum! :wink:
So last October I went to see my GP and she arranged blood tests but she said all along that she thought I had Essential Tremor not PD. Finally she referred me to neurology as well as a podiatrist for my right foot which goes into spasm. Actually the foot thing preceeds the shaking hand, I think. I remember that I was entered into the Loch Ness Marathon in September 2016 but didn’t start the race because of my foot cramping up from time to time. It’s now much worse and I can just about make it to the bus stop, although I can run further and my wife and I go to the gym.
I saw the podiatrist and she was excellent but said that she couldn’t do much until the neurologists had had their say - she believed that the foot issue and tremor was all part of the same thing.
Fast foward to Wednesday and my appointment with a consultant neurologist. He asked a few questions, got me to walk up and down and did reflex tests. Then he asked me a strange question.
“What do you think it is?” he asked.
“Um, I think it’s one of two: Parkinson’s Disease or Essential Tremor”.
He said something like, “I can tell you, it’s definitely NOT Essential Tremor”
So he left me to fill in the gap… “So I’ve got Parkinson’s Disease then”
He was 100% certain that I have PD, almost too certain. I had been given to expect no definite answers in the first appointment so his certainly took me back a little. He’s sending me for a scan of my brain but stated that he expects such a scan to come back looking normal.
He’s writing to me and to my GP and hopes I will start on levadopa in the next couple of weeks. I’d like to sit and talk to her again and see what her opinion is. He’s also going to get the Parkinson’s nurses involved too.
Actually I want to kick myself as I should have questioned him about his certainty - what specifically clinched it for him and what would have had to be different to convince him that I had ET? Too late now, but I guess the nurses will really know their stuff too.
In all of this, my boss at work has been fantastic. I have Dragon on my laptop (would highly recommend) for when my shaking fingers refuse to co-operate and I have a VPN key so I can work from home if I am having a bad day. I decided that openness was the best policy so have told everyone who I have regular interactions with. They’ve all been lovely.
Sorry for the ramble but it feels like it’s been a long journey and although I would prefer it had the diagnosis been ET, I’m still relieved to at least have an answer, even if it seems scary at times. Now to get used to the idea, get active and hopefully get fit enough to do another marathon!
Hope everyone is having an excellent Friday evening!

Euan (in Edinburgh)


#2

My neurologist was also absolutely certain I had PD on my first 10 minute appointment with her. I had previously seen another neurologist who just told me that my tremor was nothing serious. The 2nd one was incredulous about this and kept leaving through my file to recheck that the previous one hadn’t said anything about PD!

Anyway she referred me for a DATscan which confirmed the PD and I agree that, though it wasn’t good news, it was good to have a firm diagnosis.

All the best

Clare


#3

Hi @eubielicious,

A warm welcome to the forum - I’m sure you’ll receive more warm wishes from other members as the week progresses. :slightly_smiling_face:

If you’re not confident about your recent diagnosis, I’d recommend that you get a second opinion from a private doctor if that is a feasible option for you. We also have a ‘newly diagnosed’ section on our website which has extensive information on all the things you’ll need to know at this stage of your condition. We run information and support events that are designed for people who are newly diagnosed with Parkinson’s. These events are also suitable for friends, family and carers - you can find out more or register here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

Lastly, this introductory guide to Parkinson’s contains information about symptoms, treatments and living with Parkinson’s. It includes information on everything from work, driving, diet and exercise to emotional issues and relationships. You can download the guide here - https://www.parkinsons.org.uk/sites/default/files/2018-09/B181%20Parkinson’s%20and%20you%20WEB.pdf.

I hope you find this information helpful, however, if you have any questions, please feel free to contact our helpline on 0808 800 0303.

Best wishes,
Reah


#4

Hi person in Edinburgh
I was newly diagnosed in April 12 after 18 months of waiting lists, tests, consultants etc. I have spent the last 2 weeks in shock. The Parkinson’s local advisor i saw said I was like a ‘rabbit in headlights’. I am just getting it finally processed through my head. I haven’t the strength to be open at the moment. i am slowly telling one person and then maybe two next week. The extremely good second consultant has put me on medication straight away. It’s one day at a time at the moment. I think I will need to start a diary otheriwse I will just waffle on here.
thanks for listening


#5

Hi to eubielicous ,singing gardener ,Siwan

Firstly to eubielicious i have been told I have PD for about 2 years, and I know that when you get that news it is hard to understand and see that you have this now and to see a way of bettering your life style.It sounds like you have good doctor involved with your, that they are sending you for the scans and to looking in starting you on medication. You see even thow I have been on the medication for all this time I have had a new doctor now who has said that I don’t have PD, but he is sending me for another scan as my first came back negative, but in between all of this happening only a few weeks I ago I had a freezing episode, and as I see my Parkinson’s nurse, when I saw her two days again said to me that she can clearly say I have PD, she also said to me that as we are seen by neurologist, they are not specialist in Parkinson’s so when they saw my
Datscan report they could have seen me on the border line and that’s why they have asked for a retake, but also she told me that if my next report show
Negative she would like me to be refund to a Parkinson’s specialist and that will give me a lasting report of if I do or don’t have Parkinson’s, as this yes no is effecting my health too.

To singing garden, I know it’s hard to hear that you have this condition and now you have to look after your self more, but now as you know you can get all the right support. But remember you can try and keep a positive on everything and keep active. All the best

To Siwan, first you are right to take your time in telling other of your news, you first need to bring your head and thoughts together and to hopefully understand what Parkinson’s is, as when you do tell your friend and family’s they may have questions, there is a lot of support out there and on this forum too. You are right the it’s good that the doctors have stated you on the medication as this will help you and hopefully you will see the tests of them working very soon.

To all of you I have found this forum very helpful and the people on gear I have found them all lovely, as I have found it easy telling to them of all my journey, and I have had great support and advice of here too, so keep your heads up and take care all.

Regards Raz


#6

Hi there

You really have been through the mill before getting a diagnosis haven’t you? Firstly, it isn’t the end of the world and secondly you are obviously active and fit which will help you enormously. When you start on the Meds just be aware that you may have to try different ones before you find one that is right for you. You mentioned serious cramping which I used to get until I started taking 12 almonds a day! It’s great that your company and friends are so supportive and you may also find a PUK Working Age Group in your area that can add to that support. All the best for the future.


#7

Very best wishes and welcome to the club. My neurologist said “It’s definitely not MND (I breathed a huge sigh of relief as I care for someone who has MND so I am very much award of the … . . well; the less said about MND the better). I think you have mild Parkinson’s Disease…”
After several reflex tests and strength tests he told me to raise each finger on my right hand in succession ‘like a wave’ he said. Then he said ‘You know how to do it but you can’t.’ In denial I kept on trying - but I think that is what convinced him.
A few weeks after starting Madopar and Selegelin my symptoms (I could hardly walk) vanished. I certainly keep myself active and I hope you do to. Best wishes to everyone!


#8

Hi Euan,
I have been diagnosed 18 months now & not yet on any prescription meds. I have had great success with vitamin B1 & if I reduce my dose it is noticed by my wife. Things will change for you (I no longer play sax & flute but have taken up trombone), most things are manageable with a positive attitude. I too tell anyone who needs to know why I sometimes seem distracted or need to have a 15 min shuteye & I have only had positive responses, just remember you are not on your own. Gary


#9

Thank you everybody for your replies, I really appreciate it. I will reply to everybody individually, but it’s been heartening the level of support I’ve received since my diagnosis.

I also found out that my sister actually deals with Parkinson’s disease on a daily basis as part of her nursing job which I didn’t know. I’m going down to see my family in a couple of weeks time so expect to be an object of curiosity when I arrive! On that note, I’m still surprised how well my parents took the news of my diagnosis, it must be hard enough having two offspring in their 50s, and now one of them has got a disease that most people associate with older people.

I have an appointment to see my GP in a weeks time, and I now have a copy of the consultants letter. I was a bit put out by one thing he said, namely that I lack facial expression! I don’t remember him giving me much cause to change my facial expression and I was somewhat nervous and apprehensive which might explain my lack of facial expression. In the end, I’m sure he’s right, because I have stiffness and lack of swing in my right arm and also cramps in my right foot. However, I’m sure one of the PD nurses will soon put me right on this.

Slightly frustrating thing at the moment is I’m struggling to type. Thankfully I have Dragon on my laptop from work so I can use that and it seems to work very well. I have a Mac laptop at home, but the voice dictation that’s built into the operating system doesn’t seem to work quite well. Maybe it doesn’t understand Mancunian!

Have a good weekend everyone.

Euan


#10

Hi Clare,

Thanks for your message. Interestingly, my GP didn’t think I had PD at all. She thought it was essential tremor, or is she called it, a benign kind of tremor. One thing I wished I’d asked the neurologist was, what would he need to see in order to diagnose essential tremor as he seemed convinced that I did not have it.

Thanks for your best wishes.

Euan


#11

Hi Siwan,

Thanks for your thoughts and wishes. I’m still getting used the idea as well, and, I thought also of keeping a diary or maybe a blog about what’s going on. It seems like such a big thing, and really hard to get used to the idea that I have this for life. Right now, I don’t think too far ahead like you going from day-to-day at the moment.

Maybe once I’ve seen the Parkinson’s nurses and had a chat with my GP might start to make sense, and I can see a way forward to living with this.

You’re right to waffle on here, as I guess we’re among people who understand what we’re going through because they’ve done it themselves.

Bye for now,

Euan


#12

Hi Raz,

Thanks for your message. I was expecting the process of diagnosis to be much more drawn out and complicated, I certainly wasn’t expecting the neurologist to come out with such quick diagnosis, and be so certain about it. It’s been suggested that I seek a second opinion, but before I do that, I think I would like to meet with one of the Parkinson’s nurses see what they think. However, I don’t see any reason to doubt his diagnosis, even if it was done very quickly.

Thanks very much,

Euan


#13

Hi Fizzy,

Thank you for your thoughts. Interestingly I used to have almond milk in my coffee and on my oats in the morning but my wife thought I’d be better off on goats milk that’s what I’m using at the moment. I like the idea of the working age group as I was afraid that self-help group might be too scary in that I might get too much of an insight into what my life is going to be like in 10 or 15 years time.

Many thanks,

Euan


#14

Hi justthisguy,

I suppose one of the things I’m most grateful for is that I don’t have something like motor neurone disease. Also my brother-in-law has had chronic kidney problems all his life and some time ago finally got a transplant which has given him his life back, but at the same time, he has a complicated regimen of drugs that he has to take, presumably to prevent his body from rejecting the donor kidney.

One thing the neurologist I saw didn’t do was lots of physical tests apart from getting me to walk down the corridor. I was expecting him to ask me to draw spirals and things like that but he didn’t.

I expect in the next couple of weeks that I will start on levadopa and see how I get on with that.

Thanks for your wishes,

Euan


#15

Hi Gary,

Thanks for your comments. I wasn’t aware of vitamin B1 but will check it out. At this stage anything is worth a try. Interestingly, I’m a brass player but don’t have an instrument at the moment, and have given serious thought to buy myself a trombone!

I’m going to sit down with my manager at work and chat about things like medications and my energy levels, as I seem to need to organise myself much more these days otherwise I forget stuff. I really am turning into a mad list maker these days, which may of course have nothing to do with PD!

Again, thank you your response, it is much appreciated.

Euan


#16

Hi Reah,

Thank you for the information that you sent, I will look into it. I wouldn’t say I’m not confident about my recent diagnosis, even if there were some aspects of it that I was puzzled about, not least the consultants comment about my lack of facial expression which I put down to being nervous and apprehensive, rather than anything else.

I will check out the links.

Many thanks,

Euan


#17

Hi @eubielicious,

You’re welcome and even if you’re a little puzzled by what you’re consultant has said, our helpline will be more than happy to clarify anything for you.

Best wishes,
Reah


#18

Hi Euan

The facial expression bit you mention in several of your replies is actually your neurologist noting what he feels is a lack of. One of the possible symptoms (usually in the later stages) is the Parkinson’s mask which is a lack of facial movement or expression. You may feel perfectly happy but you are unable to show it. It isn’t a paralysis as such but is more the brain not telling the face to move. I’ve seen a couple of instances of this. But, as you say, you had been given a shocking diagnosis which would have been difficult to cope with. So glad you have an expert in the family to whom you can talk.


#19

Hi Euan,

Thanks for responding, and I am glad that you are being positive and waiting to see the Parkinson the nurse , yes I am One of those even thow I now all my signs meet the Parkinson list, I am so glad that they are able to re do the scan as this will make since being in what I’m seeing. But not everyone are the same as you many know, so this is your Journey Which May not always be what you have though , but I and I am sure many or most of the people on this forum room would be here .please let me know how it goes with the PD nurse too, you take care and keep us posted, make sure you look after your self.

Kind regards
Raz


#20

When I saw the specialist he diagnosed me just watching me walk to his office. As soon as I started taking the tablets I picked up quickly, that was nearly 7 years ago. My dose has increased gradually but just managed to get walk slowly to the hotel from railway station. Keep cheerful.