Hello Plus 1 - yes, I agree that the repsonse was not really what I had expected. However, your remarks have given me fresh food for thought. I am now resolved to ask for a referral as an NHS patient to Professor Chaudary’s team. It may well be six months until one is forthcoming but in the meantime, I will have also seen the consultant in Brighton. If I may, could I ask you a few questions regarding your going out of area as an NHS patient. 1. Had your husband already been diagnosed with PD when you asked for a referral? 2. How has your “relationship” with the NHS services in your area been affected by going to London for PD care and treatment? 3. Was it the quality/general dissatisfaction with the services in your local area that prompted your seeking a referral? 4. I assume you both are still registered with your local GP practice? 5. What do you do if your husband requires general information on his condition - do you phone the team in London or are you able to access personnel in your local hospital’s neurology department? I do not want to find myself cast adrfit and without any form of local support. Any other comments, etc. would be sincerely welcomed. Best regards, Mo3
Good afternoon Motherofthree … I saw M.S at the Conquest hospital 3 weeks ago & he told me that he was prescribing 1mg Clonazepam for my REM sleep problem & 1mg of Rasagiline in the morning to boost my Sinemet’s effectiveness as he put it.
In the letter to me & my GP M.S said “In addition, he is troubled by gait freezing when mobilising but this may be partly down to his peripheral neuropathy”. Do you have peripheral neuropathy? Up to 55% of Parkinson’s sufferers do apparently.
Peripheral neuropathy is a common problem in patients with Parkinson’s disease . Peripheral neuropathy’s prevalence in Parkinson’s disease varies between 4.8–55%, compared with 9% in the general population.
So the letter was sent to me after the appointment & a copy to my GP’s. I went to my GP’s twice & the receptionist looked on the computer & told me they had not had a copy. On my third visit I persisted, saying they must have received it. She asked me to wait & a few minutes later she found the letter. My pharmacy tell me my prescription will be ready at 3pm today. I will take one pill tonight & the other pill tomorrow. I trust my Parkinson’s nurse’s judgement completely.
I am on Sinemet for my atypical Parkinson’s & Amitriptyline for my neuropathy.
As I said I am seeing the Benenden / Bupa neurologist on the 15th January 2025 at the Nuffield in Tunbridge Wells. I note he does see NHS patients so if I get on with him I will ask if he will take me as his NHS patient after my two booked visits with him.
I will keep you informed as to how things go.
Might you ask your GP for a referral to see M.S at the Conquest Hospital? Another option is to speak to the excellent Parkinson’s nurses here at 0808 800 0303.
Best wishes
steve2
Hello Steve2 -thank you for the update. I do not have neuropathy, so it’s just the additin of Rasagiline for me. I notice there is a difference between what is said at an appointment and what is on the letter. This is infuriating, as often the PD Nurse here has mistakenly understood what I had said. There was no explanation as to why the new med, other than asking the GP to prescribe. Please do keep in touch regarding how meds and consultations and what have you progress (or not). I will endeavour to monitor my reaction to the new med. After a year, you’d think they would have a handle on what it could be, instead of initially not believing me or thinking I was exaggerating, or trying to convince me that I had symptoms that I did not have, and every other combination and variation. It was truly heartening, if I might say so, to learn that your symptoms are essentially the same as mine. I’m not alone! I agree that we may be no further ahead after the appointments with the consultants but at least we have not stopped and done nothing! All the best Mo3.
Hello Steve, forgive if I’ve missed a few posts, or indeed muddled you with another Steve ? Many apologies if I’ve done this. I thought I’d seen you had posted you’d been diagnosed with atypical Parkinson’s ? Have you had a DATscan ?
As such I assumed you’d be seeking input from a Parkinson’s specialist neurologist ? You are now suggesting you are unsure of your diagnosis ?
Best Wishes Jane
Good evening Jane aka Plus1 … I was christened Stephen, but I prefer Steve. I play indoor bowls most days & a lot of the bowlers call me “unlucky Steve” on account of the good shots I nearly make. Yes, there are a lot of us Steve’s.
I was told I had Parkinson’s by the head GP I saw when I moved to Sussex 5 years ago. But I was of the opinion that I had a bad back. After 3 years I got to see an Armenian locum neurologist who specialised in neuropathy. I had a spine mri scan
[3 areas of wear & tear age related damage], a brain mri scan [normal] & I also had a positive datscan that showed I had “Parkinsonism” & was diagnosed with
Atypical Parkinson’s. The neurologist told me that atypical Parkinson’s did not react well to medication … Did I want to bother?
Around this time my foot swelled up & my left foot & left leg felt numb & I was diagnosed with peripheral neuropathy.
My problem is my mobility. I cannot stand still for more than two minutes, if I do I freeze. If I sit down on a chair when I get up I struggle to move. I sort of stoop moving from chair to chair about my flat.
If I walk for more than about 50 yards my legs become incredibly heavy & my lower back extremely uncomfortable.
I shake when I’m eating or carrying anything away from my flat.
I have not seen a neurologist since 2023 & no one since my neuropathy was diagnosed.
I have nightmares & sleep very poorly if at all & am pretty exhausted each & every day.
I would like an opinion on what is causing all these problems I have.
Best wishes
[Unlucky] Steve2
Hello Motherofthree
I created a full reply to your questions which as far as I can see is lost in the cloud somewhere. My mistake I believe as I had also responded to Steve, Did you by chance see the answers, if not I will reply again.
Jane
Hi
Asking your GP for a referral to a hospital outside your Integrated Care Board area will have the effect of transferring PD care to that consultant and the hospital he is based at. All relationships with your local NHS will remain except for the PD. I live in Norwich were I get most of my care except for the PD and also neurosurgery care that I receive in London at the National Hospital for Neurology and Neurosurgery. I was diagnosed there when I lived in London and kept my care there when I moved from London as it is a centre of excellence. Changing hospital will not affect the GP you are registered with. All of the PD care will be based at the hospital you ask to be referred to including PD Nurses and reviews with your consultant (although I do not have a PD Nurse as I do not need one). Your consultant would need to arrange for anything that you had to access locally.
Hope this helps
Doug
Hello Douglas - a very informative, clear and useful reply. Thank you.
I too agree it’s money well spent!
Good morning Motherofthree … I have been taking Rasagiline for 7 days now & have developed a pointy tail & two horns growing out of my my forehead [a LOL]. However my legs have felt heavier but better today, probably a coincidence.
Rasagiline prevents dopamine metabolism irreversibly, thus increasing levels of dopamine , the result being a symptomatic benefit in patients with PD. It has demonstrated clinical efficacy in both early monotherapy and in advanced PD as an adjunct to levodopa.
Carbidopa-levodopa (Sinemet ): The most effective and well-tolerated drug the medical profession has to offer at this time is carbidopa-levodopa. It often helps with bradykinesia (rigidity and rest tremor). It generally does not help with imbalance or falls, freezing and non-motor symptoms.
The Clonazepam has helped me sleep.
Only 26 days till I see my new neurologist.
Best wishes
Steve2