Do I wait for the NHS or go private for diagnosis?

About Parkinson's and health Newly diagnosed
1

Hi, totally new to this site. I’m not yet diagnosed but have had 1 neurologist visit. Dr sent me for MRIs which were all clear but my symptoms are moving on quickly and I don’t know what to do. No GP or neurologist would accept me self diagnosing but it’s impossible for me to ignore what my body is saying. The earliest I can get another neurologist appointment is 3 months from now, but my pain (leg and arm), stiffness and kicking legs are stopping me sleeping. I’m going backwards in my Pilates class, my voice is dull and husky and generally I’m unable to enjoy life as I did 2 years ago.
What do I do?
Any advice gratefully received

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Hello Val67,

Thanks for getting in touch and we’re sorry to hear all of this. Our forum members may be able to give you some peer to peer advice - but we would strongly recommend speaking to your GP regarding your concerns to receive a medical assessment.

You can also pop our helpline a call on 0808 800 0303 and our friendly team can offer you some support.

All the best
Parkinson’s UK Moderation Team

1 Like
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Good evening Val & welcome. I am 71 years old & I was diagnosed with Atypical Parkinson’s in June 2023, following a datscan which was diagnosed by an NHS neurologist to be positive for Parkinson’s. I also had a normal “for my age” mri brain scan.

Since then I have seen 3 private neurologists. One for neuropathy, one for sleep issues and the last one for a second opinion on my Parkinson’s diagnosis. The results were I have neuropathy but it is mild, the second neurologist said my severe sleep issues were probably caused by Parkinson’s and the medication I take for Parkinson’s. The third and best private neurologist thought my datscan was normal and the second opinion he got for me suggested mild Parkinson’s. He said my balance issues and gait freezing were not Parkinson’s but most likely damage to my spine which showed up on the mri spine scan I had.

So things can go round in circles and achieve nothing.

I would certainly suggest you pay to see a neurologist [around £250] specialising in Parkinson’s as a starter and go from there. I got my private appointments within
7 to 14 days. A datscan is probably a waist of time as you will be put on Parkinson’s medication either way to see if it helps.

Look up Nuffield Hospitals and Bupa hospitals near you for a neurologist.

Any questions please ask.
Best wishes
Steve2