Does anyone who has been diagnosed with Parkinson's think they might have been misdiagnosed?

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I was diagnosed with Atypical Parkinson’s in June 2023 following a positive Datscan & examination. I have / I had a theory as to what is wrong with me. I had an Mri scan of my spine & there are three distinct areas of damage. One at the base of my spine, one between my shoulder blades & one in the middle of my spine. I have been taking Ibuprofen for this for 5 years. If I stopped taking the Ibuprofen the pain was so bad I could not move my head. When I was too old for Ibuprofen I took Amitriptyline which is equally good. Every time I have stopped taking the medication the unbearable pain returns.

The past couple of months I have had this pain when I wake up most mornings. The pain is like having a knife thrust between your shoulder blades. Also these past few months my legs have felt a lot more numb than usual & very heavy & I struggle to walk at all. I am told I have neuropathy & have had tests that have proved it.

So I think the damage to my spine causes the “gait freezing” & numbness in my legs & my trouble walking.

I suspect my shaking & fatigue may be down to the Parkinson’s medication I am now taking. I do accept that the Sinemet does help my gait freezing to be less severe.

Any thoughts on my diagnosis anyone?

The NHS neurologist who gave me my diagnosis was not a Parkinson’s specialist. He was from Armenia, he wore a mask & I did not understand a lot of what he told me. Him saying that I had atypical Parkinson’s which didn’t respond well to medication & I was wasting my time taking anything for it rather lowered my opinion of him. Although he was a good “facilitator” getting me a very quick Datscan,
Mri brain scan & Mri Spine scan. But I have seen no one since other than my excellent Parkinson’s Nurse. This Nurse says I am an interesting case who has “a lot going on” making diagnosis & treatment difficult.

Through the excellent Benenden Health Insurance company he has referred me to see an excellent teaching neurologist specialising in both Parkinson’s & neuropathy. The consultation is in a Nuffield Tunbridge Hospital Hospital a week on Wednesday.

Now what questions should I ask ?

My own big question is whether I might have an operation on my spine & would it help my mobility [walking] & gait freezing?

Anyone had a similar operation ?

Best wishes
Steve2

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Your situation does sound potentially other things could be at play or at least worthy of another opinion / view.
It is a strange disease that can’t be easily tested for / identified has multiple symptoms, meds that help some symptoms and no known way people get it or any cure (yet).
I have found since taking Sinimet some symptoms have improved but some new ones have come along too. For example my left arm used to be stiff and not move much, now it moves but has a tremor and finding some muscles in my legs pulse when I’m not moving.

3

Afternoon JD … Rather than diagnosed opinion they should call a Parkinson’s diagnosis as an educated guess.

I am hoping I get some benefit from my 15th January appointment.

Best wishes & good luck with your Parkinson’s journey.

Best wishes
Steve2

4

My Neuro made a tertiary referral (afterwards agreed to by my GP) to a top neurosurgeon at the National Hospital for Neurology and Neurosurgery because of arm problems. I had Left C6/7 foraminotomies and that solved my left arm problems. My spine continues to deteriorate, however, and a review MRI has now shown damage that the Multi Disiplinary Team has said requires further surgery. Symptoms from my spinal deterioration are not part of my Parkinson’s Disease.

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Good morning Douglas … I am certain that nerve problems in my spine is causing the nerve / neuropathy problems in my legs. once again this morning there is a centralised pain between my shoulder blades. The pain radiates from a centralised area.

How did you manage the operation. Recovery time / operation time …

Best wishes
Steve