I was diagnosed with PD in 2017, and my symptoms to date have been tremors in my right hand and arm, because of excruciating cramping in my right forearm my Neurologist started me on Sinemet and I take 75 msg a day. When he first prescribed this he said he would review in 2 months. Then Covid happened and it is now nearly 2 years since I’ve seen him and feel that I need to increase my dosage because I am getting breakthrough pain. Should I just go ahead and take more Sinemet, or do you think I should go and see my neurologist privately as it’s impossible on the NHS just now. I feel as if I’m slipping through the cracks and would appreciate advice. Thank you Kate
If it were me, I’d get a private consultation. I almost did that when my original NHS “urgent” appointment came through for five months in the future. I was already in a bad way, and so tried to organise a private consultant appointment. I asked my GP for a referral and the appointment to the private hospital was organised to be in 10 days. In the end I didn’t use that appointment because I ended up in A&E instead.
I was concerned that a private consultation would lead to private tests (such as MRI) at the cost of £1000s. But if it were just for a medication review it would have been £250.
I keep seeing mention of “Parkinson’s nurses” on this forum. I don’t know if they can do medication reviews (?).
Hello Lemon, my own Parkinson’s Nurse is certainly able to and has made minor adjustments to my medication but I understand (and this may not be so ) that not all can.
Hello Welshlady, Lemon has given good advice. However I would first give your NHS consultant another try. Ring his or her secretary and ask her to bring your case to their attention, I would follow this up with a confirmatory email. Stress you are concerned that it has been 2 years since your last consultation and that an urgent review of your meds is needed because you are experiencing pain.
Hello Welshlady and Lemon,as Tot says most of the Parkinsons nurses are very good and have a lot of usefull advice. they can also contact your Neurologist for you, unless as Tot says contact yours yourself or through their secretary, I would probably go down this line of contacting them instead of going private.Hoping you are able to sort it all out. Good wishes
I won’t go into the “politics” of whether to go private.
Regarding the pain, it is likely to be dystonia due to a lack of dopamine, which can easily be fixed (at least in the short to medium term) by increasing your dose of Sinemet.
If you had good care, it would be possible to slowly increase your dose (titrate) until your symptoms go away. 75mg levodopa per day may have been acceptable once, but now almost 2 years later it is likely to be too low.
Have you tried your GP and/or Parkinson’s nurse for an increased prescription? If they refuse to help, and you’re faced with putting up with months of “excruciating cramping”, you may wish to discuss with your medics using mucuna pruriens, which is available without a prescription.
My husband has a neurology nurse who he can contact at any time and they have increased his Sinemet as necessary. Can’t you contact the Neurologists secretary? It seems very wrong that you need to have a private appointment to have a medicine review!