I’ve joined this forum as I have been going back and forth with my GP and neurologist for 4 years. I’ve been having problems with arm pain, stiff neck, and a slight tremor in my left hand. I’ve also lost quite a bit of weight, issues with bowels, sexual dysfunction, painful stiff legs etc which are symptoms associated with PD. I’m on pain meds which also cause some of these symptoms as side effects. Am I worrying for the wrong reason? I’ve asked my neurologist outright if they have ruled PD out but not had any response yet.
So just looking to see if anyone experienced similar issues with diagnosis. I’m only 42 so it would be early onset which also makes it difficult to diagnose. After 4 years of different diagnoses and medications I worry I’ve lost valuable time.
I had a tremor in left hand and a few falls went to see GP and was told put both arms out and she said it’s not Parkinson’s as both hands would be shaking ???
So I as asked for another assessment a few months later and was referred to a specialist and she confirmed I had Parkinson’s
I think it’s all a guessing game and should be confirmed with a brain scan
Good luck with your problem
Paul
Hello Scotnurse and welcome to the forum.
I have read your post several times and wanted to reply but to be honest I wasn’t altogether sure what to write. In the end I decided to just pitch in and see what happens lol.
The first thing to say is that on reading your post rightly or wrongly, there seemed to be a growing sense of panic which I do understand when you’ve had four years trying to get a definitive answer. When you are wound up it is difficult sometimes to see the wood for the trees and I get the impression that you are now at that point.
Some people and you are clearly one, for whatever reason have a difficult time getting a formal diagnosis and I can only imagine how frustrating, the worrying and possibly frightening that must be. However worrying about whether you’ve ‘lost valuable time’ before you even have a diagnosis doesn’t achieve anything nor does it change anything, so do try and stay calm although I appreciate that is easy to say and not at all easy to do.
You say that in your four years you’ve had different diagnoses and medications and presumably some time has been taken up with your testing these diagnoses and the medication that went with them until it was decided that the answer hadn’t been found. That must have been incredibly disappointing and hard to pick yourself up each time but you did it, and credit to you for managing that.
I am wondering if you have thought about getting a second opinion, you do have the right to seek that and maybe a fresh pair of eyes will make a difference. It strikes me you have nothing to lose by following this up if you haven’t already done so.
I see that is what paulterrie did and he got a diagnosis by doing so.
It may be worth giving the help desk a call to get their view and perhaps they will have some suggestions that may help you decide if there is anything else you can do.
I’m sorry I can’t offer something more reassuring but it is a fact that some do take a long while before a formal diagnosis can be given and there are many reasons for this. You’re doing what you can to be proactive and I think that’s all you can do and please do think about a second opinion and speaking to the help desk if you have not done so; at least it’s a new avenue to try.
I hope things become clearer for you soon.
Best wishes
Tot
Hi Scotnurse,
As Paulterrie and Tot have helpfully stated, sometimes a correct diagnosis of Parkinson’s can be difficult, simply because its symptoms are shared with many other conditions. And, of course, doctors are not infallible. We would encourage you to seek a second opinion, especially as your challenges seem to be worsening. Please feel welcome to reach out to our free and confidential helpline, on 0808 800 0303, as they can assist with this, in ways you may not have considered.
With our warmest wishes,
Jason
Forum Moderator
Hello, have you had a DATscan ? If not ask your neurologist or another one if you’re seeking a second opinion. This seems to be the definitive procedure to diagnose Parkinson’s- Good luck.
Yea, it is difficuly enough for a neurologist to pick up the first symptoms of PD, let alone a GP, who would seem in this specific case to be totally ignorant about the symptoms.
Luckily/unluckily enough I have seizures so was seeing a neurologist over that time, so it was picked up fairly quickly.
