I have a doctors appointment next week and after getting nowhere with other treatments and consultations I’m not sure how to approach the “maybe its PD” discussion as I don’t want to seem like I know it all which I clearly don’t.
Many symptoms I have have been going on for years, all of which I put down to being T2 diabetic, some have been treated by the doctor others not.
Shoulder pain (originally treated with physio) went away after 2 years but is back now. Constipation been given various things by doc but still present after 3 years. Swallowing difficulty again about 3 years saw doc but they found nothing, getting food stuck and choking is a real issue, last time almost needed an ambulance. Happened again today too Burning Sensation in the feet this is relatively new about 6 months leads me onto next point Sleep or lack of really struggle to sleep have done for years have been prescribed tablets but nothing helps Restless Leg sometimes it just wants to move all the time very annoying Urination get up on average 3-5 times a night (also doesn’t help sleep) plus can get leakage occur on occasions Balance Issues have to hold onto something when standing, been like it for years Vision Issues blurred vision first thing in the morning this is more recent though Leg Cramps daily occurrence for last few years doc gave me vitamin D no different, even get cramp walking during the day but usually at night. Drooling especially at night
As you can see I have been treated for many things, no one has ever mentioned PD (was aware of it though as my nan had it) it was only this year when I had the odd hand tremor that made me think twice.
Just don’t want to waste doctors time and go in and give him my thoughts, plus in all honesty it scares the daylight out of me. My wife is pushing that I go and I can see her point of view and booked an appointment but not looking forward to it…ignorance is bliss
It sounds like you need an answer. That’s a lot of symptoms. My GP was looking for tremor, stiffness, & slowness, as the main indicators for PD. I didn’t have slowness, but did have postural instability, which I found out later is another main indicator.
Hello @thepominlaw and welcome to the forum. I can understand completely why you’re reluctant to speak to a doctor about these symptoms and perhaps learn that you have Parkinson’s, but it really is vital and the only way to be sure. I see that @Lemon has already answered you and hopefully there will be others joining in.
Parkinson’s affects everyone differently but to learn more, you’ll find this page very helpful in sorting out your thoughts and forming some questions for when you do get an appointment. You can also call our helpline on 0808 800 0303 if you need someone to listen and give you some support.
It’s certainly worth speaking to your doctor. Each of us with PD seem to present with a different set of symptoms. There are a couple of symptoms that you may not be aware that you have but may be important. The first is a reduced sense of smell - this is the symptom that along with my tremor got my GP to refer me to the neurologist. The second is reduced arm swing in one arm. You really need someone else to point this out to you.
It’s highly unlikely that the GP will be able to give a diagnosis but may refer you to a neurologist. I don’t know about others experience but for me the time scales were quite long. My first appointment with a neurologist was four months after the referral. After a couple of scans I got my diagnosis four months later and the first appointment with a neurologist after my diagnosis was over a year after my my initial visit (or rather telephone conversation) with the GP. So don’t expect an instant diagnosis .
Usually when I respond to a post I write quite fluidly, I often feel like they almost write themselves. Yours has left me wondering about the best way to respond or maybe perhaps it’s not one where I can be of much help; moreover I hesitated
to reply because my thinking could so easily be misinterpreted and that’s the last thing I want. However I always try to be honest in my replies so have decided I will tell you my thoughts but they are only my thoughts you don’t have to agree.
You wrote ignorance is bliss but you’re not ignorant you’re guessing
I don’t think you should be concerned about your ‘maybe it’s PD discussion’ With such a long list of symptoms over an extended period with few answers I think it would be unusual not to draw your own conclusions. It might be easier to start though if you premise it with something like I am worried/concerned it might by Parkinson’s.
I suspect you are less worried about wasting the doctor’s time than you are scared
To play Devil’s Advocate for a moment. There is an argument to say why bother with your appointment when you’ve managed so far as is - I’m not suggesting that it has been easy only that you did it. I think it would be easy for you to accept that argument because of your apprehension over your forthcoming appointment. The impression I get from your post is that a lot of stuff is mixed up in your head and that has made reasoning difficult. That’s what I thought and felt on reading your post.
Only you will know whether or not that is anywhere close to accurate. In the end I decided just to go with whatever evolves, and if it’s helpful great if not that’s OK too.
First of all I am not a doctor, I don’t know what your doctor will do at your appointment and because you don’t know that it is Parkinson’s for sure I will keep my comments general
First I think you need to understand there is nothing wrong with being scared about such an appointment. It is entirely natural to be apprehensive and scared after all the outcome could be life changing and once told like the genie of the lamp, it can’t be taken back. Equally though not finding out what is going on doesn’t stop it. If it is Parkinson’s for example, you may argue it’s better to live not knowing but that of itself won’t stop it progressing.
Once you have a diagnosis it may knock you sideways to begin with, and you may well run a rollercoaster of emotions. There’s nothing wrong with that, ultimately you will find a way to have it part of your life. How long is what I call a piece of string question. it takes as long as it takes.
It may be helpful to print out the list of symptoms that you put into your post to take to your appointment. Hopefully this means your situation will be looked at as a whole not individual elements.
All very well you might be thinking but is there any benefits to knowing, especially with a condition like Parkinson’s where you don’t have to read much to see a recurring theme ie it’s affects everyone differently etc. Well there is the main one being whatever it is you can get the right treatment, improve your quality of life and manage deterioration if that is what your diagnosis indicates. you can understand better what is happening and make informed decisions about the best course of action. you are unusual in your view ignorance is bliss and to be blunt I’m not sure I believe that. I think you are exactly the same as most who are awaiting a diagnosis wanting to know but scared at what they might be told. Not knowing won’t bring you peace nor in all probability will the diagnosis when you first get it. As I’ve said before a lot of the conflicting emotions are caused by that most powerful part of the body your brain and when you’re feeling vulnerable the negative voice is loud and strong. You may or may not have Parkinson’s. Whatever it is like us here on the forum you will find a way to make the positive voice the stronger and that gives you options burying your head in the sand won’t. it may not be an easy future but it’s your life and your future don’t let fear of the unknown stop you taking a chance on getting the best quality of life you can.
I hope this hasn’t caused upset you that’s not my intention but I appreciate this is not an easy read. it’s honestly what I think but you can tell me it’s total rubbish if you think that. I think you want some answers now or else why post as you have. It’s your appointment be brave and go. The forum is a good place to have in your corner and ýou can come back any time.
Good luck.
Tot
I recognised that my husband more than likely had Parkinsons before he got to see a Neurologist. As it happened the first Neurologist we saw was basically an expensive waste of space, he was NHS so it was not directly at our expense although he was paid via our tax and NI contributions. The second Neurologist we saw was much younger and really good. Go see someone as soon as possible, it may take some time to get a proper diagnosis and even then you will not have to start with the drugs straight away if you want to wait.
I bet you have PD. And this is what I would do, but no one who is medical or in a position of authority will condone !
PD symptoms stem from a lack of dopamine
Dopamine is not a toxin, and hence introducing dopamine into a healthy patient is more than probably safe, for a short period ( 3 days is my non medical recommendation!)
After all, you just want a diagnosis
I know I would speak to a friend who had PD, and ask for 3 days supply of levidopa pills…I suggest 15 pills
You have been in total turmoil for approx a year, cursed by a horrid range of typical PD type symptoms
If you took levodopa in sensible quantities (2 x 100mg pills every 4 daytime hours)…for just three days…avoiding alcohol and dairy products…
I bet you you would feel a weight off your shoulders on day 3…
I suspect you will feel magnificent!….you would though, in effect…you definitely do have PD….and need to get a regular supply of Levidopa / Sinemet
sanction
If after 3 days, nothing has improved…then,for my money…you have a separate neurological timebomb ticking away…but not PD
Sometimes …what is practical…is not recommended by doctors…fear of litigation….people with PD though…just want quick help. Bon chance.
Saw the doctor this morning, mentioned all the issues and symptoms. He is 100% sure it’s my T2 diabetes as such is going to have a look at changing my medication which hasn’t changed since 2006
