Hi Everone, I/we feel in limbo… I’m Loulou my partner was advised by the Consultant at a Parkinson clinic last week that out of a list of symptoms we had kept in a diary some could be Parkinson’s and some don’t fit into a Parkinson diagnosis. He isn’t discharged, the Consultant wants to review him in 6-7 months time.
My question is have any of you had this waiting game at the beginning of your journey? Thank you.
Hello Loulou,
Welcome to the community forum. You’re sure to hear from the group soon, as “the waiting game” is a common topic of conversation. In fact you can use the search function in the top right to locate those older threads and have a read if you like.
We also have a free and confidential helpline on 0808 800 0303 staffed with a team of advisors who are happy to answer any questions you have and can often assist in surprising ways. And of course our website at Parkinsons.org.uk is kept up to date with research news and is flush with helpful information on a range of subjects. You may find this page a good start: How is Parkinson's diagnosed? | Parkinson's UK.
We hope these tools can help, and we offer our warmest welcome.
Jason
Forum Moderator
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Good morning Loulou … Sorry to hear you & your partner are having these problems.
I am 70 & was diagnosed with Atypical Parkinson’s in June last year following a positive datscan. I also have mild neuropathy & wear & tear age related damage to my spine. I also have A-Fib & have had aggressive prostate cancer & had my prostate removed. I am on a lot of medication that causes side effects. So some of my symptoms are Parkinson’s related & same are not.
You don’t say how old your partner is or whether he has been given any Parkinson’s medication like Madopar or Sinemet. A bit more information would help us have an opinion.
Any questions do ask.
Best wishes
Steve2
He is 62 and no medication given. Also he has had an MRI in the last 3 years so was reluctant to give him another. Thanks for your reply.
Hello Loulou & thank you for your reply … my understanding is that brain mri scans are given to rule out other non Parkinson’s issues. So clear recent brain mri scans is good news. You might ask about having a datscan. I had a positive datscan showing Parkinsonism, which is about as close to proof that you can get.
I am surprised that your Partner has not been put on Parkinson’s medication as a positive response to the medication is a good sign of Parkinson’s.
Best wishes
Steve2
58, had Parkinson’s diagnosis since 2015. The entirety of that ten years have all been a waiting game. My Parkinson’s nursing team suggested a 3 months waiting period to evaluate any prescription change. I have told them repeatedly that I know if something is not going to work within a fortnight.
Based on reports from a US forum for Parkinson’s that I subscribe to, I have been asking the NHS if I could try a low dosage of clonazepam to help relieve the rigidity that I get from my Parkinson’s. It has taken them 8 months to reluctantly allow this, even then starting at half the dose that the other people had suggested was effective.
I have been on the new higher dose (0.5mg daily) for just 3 days and can confirm in my case at least that the results are exactly as people told me, resulting in three of the best nights sleep I have had in over a year.
It is not the doctors or nurse’s fault. In my opinion they are simply at breaking point and are pushing people away simply because they do not have the time. It is very much a case of the squeaky wheel getting the grease.
clonazepam has made a positive difference to me. It is an excellent drug. I have heard it is addictive & is not supposed to be a forever drug.
I’m also on 0.5mg.
Best wishes
Steve2
“Forever” is an odd concept to bring to a Parkinson’s group…none of us have the life expectancy of a normal “man in the street”.
My specialist even suggested I could be addicted to the L-Dopa that I take, but that’s like saying I’m addicted to oxygen; if the quantity I get is reduced, I feel terrible!
The NHS seems to have a real stick up it’s backside regarding addiction, but I think concern about it is more about liability as there have been a number of cases of doctors being sued for prescribing drugs to which patients have subsequently developed an addiction.
I won’t be suing anyone if the Clonazepam keeps on providing this relief. I only regret that it took them eight months to listen to me.