Can anyone tell me where I am supposed to go for help?
My meds werent having much effect after 3/4 months so phoned and left message for pd nurse ref unpleasant symptons experiencing , (head tremor, cramps etc) and should I increase meds. PDn eventually phoned me a week later and said she would speak to neuro ... That was on 1 August. I emailed again last week to tentatively ask if she had any luck but have still not heard anything .
in the meantime whilst waiting for advice I upped my meds by /mg of my own accord but after 5 days went back down and then a further reduction of 2 mg as still experiencing unpleasant symptons.
Should I be phoning my GP or waiting for my next neuro appt (every 9 mths) - I know the pd nurses are very busy, but what, where, who are we supposed to go to?..... I feel a bit of a nuisance, but there just doesn't seem anyone you can turn to
Your PD nurse does not sound like she is much cop to be totally honest with you.
I am basd in Lincoln and mine at Lincoln County are fantastic and the same goes for my GP. My advice is only see two GP's in relation to your PD. I see my own GP most of the time. But if she is not available i have a back up GP. I know with some surgerys this is difficualt but you have the right to change your Dr when ever you want. And to beat this horried condition you neen to fight mentally. I know that is hard for some of you out but trust me it works. When i feel my meds are not as effective as they were i do my own research then i go to see my GP, only once in the period since my developing PD has she not agreed with me. Educate yourselves about PD. Because the more you learn about this the better, all info available on this website. Come on PWP get learning you will find it gives you more fight.
I'm not an expert but here are a few thoughts
Don't feel like you are being a nuisance. Neuros, Parkinson's Nurses and GPs are all busy but you need their advice to get your meds right and keep them that way. I'd always suggest that your Parkinson's nurse is your first call and its a pity that didn't get you a result. You could try calling the Neuro directly. If that doesn't succeed don't hesitate to contact your GP. Your GP may not have the experience or expertise to advise on the Parkinson's meds but they may be able to encourage your Neuro team to help.
The other option is to contact the Parkinson's UK helpline on the phone number at top of the page. The advisors there can help you decide how to proceed. The helpline team includes some Parkinson's Nurse Specialists and if necessary one of them can give you a call.
I hope you get the help you need.
EF
