Hi everyone, I believe that I have Parkinson’s. I have rigidity in my legs, which never eases, this started on my left side first and is now on both sides. I walk really slowly. My feet constantly hurt and ‘throb’, my smallest three toes constantly want to cramp downwards. I have lost my arm swing, left arm first, then the right. I have a resting tremor, most noticeable in my right hand. I’ve had an MRI which was normal, now waiting to see a neurologist. My GP originally dismissed me having Parkinson’s as my tremor and my walk weren’t ‘right’ for it. Now she’s said it could be functional neurology disorder, but after the research I’ve done on it, I’m not convinced. Thank you for reading.
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Hi and a warm welcome to the forum @Amagems
I’m sorry you’re experiencing some distressing symptoms and don’t know what’s going on. This must be so difficult. We have a friendly community here with other members who know exactly what you’re going through so I’m sure it won’t be long until you hear from some of them who will talk about their own experiences.
We can’t give you a diagnosis here, of course. It may take some time as there are other conditions with similar symptoms, which is why your doctor wants you to see a neurologist. Sadly, there is also no definitive test for Parkinson’s.
While you wait for the next step, you can visit the Parkinson’s UK website for more information on how Parkinson’s is diagnosed: Do I have Parkinson's? | Parkinson's UK. We also have a great team of advisers that you can reach on 0808 800 0303 for information and support.
Best wishes,
Janice
Forum Moderation Team
Hi @Amagems
It certainly sounds like Parkinson’s and, whilst I am not a medical professional, I suspect your GP was wrong to dismiss it as a possibility. Parkinson’s is highly variable in its symptoms from one person to the next.
An MRI won’t be able to confirm if you have Parkinson’s, but a DaT scan can with about 90% reliability, though this is an expensive test.
Hi Amagems
Seems you’re in that horrible time waiting for an answer.
My consultant said that “Parkinson’s” was only a place-holder diagnosis - and was subject to review.
I was glad I be diagnosed with Parkinson’s, because my symptoms were suggestive of things much worse.
I might not get to keep it though, as my symptoms are developing in a different direction.
I think the main thing is to be under the care of a consultant.
Thank you for your replies. I must admit I wasn’t filled with confidence when my GP googled the systems of Parkinson’s in front of me.
Hi @Amagems hopefully when you see a neurologist they will organise you a DATscan which is what confirmed my diagnosis. What’s your handwriting like?
@Pcyc Thank you for your reply. Hopefully they will, I just hope the wait isn’t too long. My handwriting changes as I’m writing, it gets smaller the longer I’m writing
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@Amagems as you probably know, that’s a classic PD symptom. Let us know what happens next. Good luck!
Amagems
Just a thought, I was diagnosed in 2019 and according to my neurologist I didn’t show the classic kind of particular symptoms but his suggestion was that I take a six week course of madopa and if my symptoms improve then I most likely have pd. they did improve and further evidence concludes that I do indeed have pd. it might be worth pursuing this route if you have no other success. Regards Hemyock
@Hemyock Thank you, that will certain be worth me mentioning that to the Neurologist. Although my GP said that if it is PD, they wouldn’t give me any treatment anyway, due to my age (I’m 50).
@Pcyc I will do, thank you
HI Amagems When I was first told that I had PD which was in 2010 I did not know what to expect. The neurologist, said to me Walk to the end of my room and walk back again, I tell you now you have “Parkinson’s!” and that was that. At the time I did not know anything about PD. still don’t know a lot. What you do have to remember is that it effects us all differently. What works for one person some times won’t work for another. When I came out from seeing the neurologist there was a stand with PD leaflets on, and a lady little older than myself, she told me/and advised me which leaflets to take home and look at, I picked up a DVD about advanced PD, NO!! don’t take that DVD she said. I read all leaflets from cover to cover, then watched the DVD, how right she was. So my advice to you is don’t try to run before you can walk, yes we all want to know what the PD has in store for us, but we all go at our own pace. Join in with groups, do some fund raising for PD and become a member of Parkinson’s UK I only say this from experience as they have helped me quite a lot, and make friends with your PD nurse, but above all keep posting as we are all friends united in this group. ps I hope this helps. pps I will allways be great full to that lady who was passing on leaflets,
@mary1947 thank you so much for your reply. I really appreciate it