Glenchass,
I've mailed you some contact details which may help.
Ray.
Thanks Ray. I have received them. Take care
Glenchass
Glenchass
Good luck, Glenchass, keep us updated.
Apparently many DAs (including the one I was on) are available on the black market as "libido increasers"......
Greetings to those returning from Desperate Sister's thread, and many thanks to Eck and Titan for working towards mutual understanding.
Much appreciated.
Much appreciated.
advice please. What does one do when the recommendation (to help with increasing tremor) is to up the dose of DA. And one knows the DA's are affecting mind, body & soul
Ask for a second opinion (you're entitled to)?
Ask if the non-DA component of your medication can be increased instead?
Ask if the non-DA component of your medication can be increased instead?
Did you tell neuro that DAs are effecting you?what meds are you on?
Ropinerole. Yes I did mention to the neuro that I was unhappy with the side effects. His reply (& I quote) " we have spent a lot of time, trouble and money deciding what is best for you" I gave up listening after that
What a plank! 
Why not ask your GP to refer you to an alternative neurologist - you have the right to do this.
Ray.
Why not ask your GP to refer you to an alternative neurologist - you have the right to do this.
Ray.
I wish I could. Took nearly 2 years for a referal to "the plank" & he is out of area. My local (ish) neuro is so overwhelmed she is not taking on any new cases. Which is a pity, because I am informed that she has a special interest in PD
could you see her privately for a couple of visits?
going privately for a consult is an option. But what happens then - given that my NHS neuro is out of area?
Well, a consultant working privately isn't interested in NHS areas. They're just responding to a private individual requesting an examination and/or professional opinion as to the best course of action, i.e. medication.
They will then provide written confirmation of their conclusions to you (as the requester/bill payer), and - if you ask - send a copy to your GP, whoever or wherever that may be.
You can spend as much time, or as many visits, as you like with a private consultant explaining your individual symptoms and experiences and asking for explanations about how the neurology and different medicines/drug groups work. After all, the consultant is being paid by the hour! He/she will also be motivated by keeping YOU satisfied, NOT the GP, since YOU pay the bills.
And if your GP is presented with recommendations which are at odds with what his NHS consultant is saying, it would be a brave GP who'd ignore the private conclusions, I'd suggest.
They will then provide written confirmation of their conclusions to you (as the requester/bill payer), and - if you ask - send a copy to your GP, whoever or wherever that may be.
You can spend as much time, or as many visits, as you like with a private consultant explaining your individual symptoms and experiences and asking for explanations about how the neurology and different medicines/drug groups work. After all, the consultant is being paid by the hour! He/she will also be motivated by keeping YOU satisfied, NOT the GP, since YOU pay the bills.
And if your GP is presented with recommendations which are at odds with what his NHS consultant is saying, it would be a brave GP who'd ignore the private conclusions, I'd suggest.
Thank you Ray. I am reminded of the time, years ago, when a friend of mine who happens to be a GP & who noticed my symptoms suggested that I consult a neurologist privately. I poo pooed the idea at the time, but I think it's time to consult my bank account & then go for it. I admit to disappointment as I (would like to) hold the NHS in great regard
Is ropenirole only med you are on for pd? How long have you been on it for?
yes Dotty the only one and since January 2010
Has it helped with pd symptoms?
Makes me angry that there are warnings out there,someone knowing the meds are causing them side effects and asking for help and then to be told increase them.
Just wondering if sleep pattern has changed since starting meds.
Makes me angry that there are warnings out there,someone knowing the meds are causing them side effects and asking for help and then to be told increase them.
Just wondering if sleep pattern has changed since starting meds.
well, I think ropinerole helps with the tremor. At least my left side knows when it needs another dose. But i do think the positive effect was early on and has decreased, so maybe that is why an uppage of dose is suggested? As for sleep patterns,I am convinced ropinerole is to blame. I am lucky if I sleep for 2hs/night. On the other hand might it be a consequence of reduced physical activity?
One of my side effects was being on pc 24/7 totally addicted to it,often sat logged into forums and msn alone for hrs just waiting for someone to sign in.At that time there where quite a lot of posts deleted couldn't risk leaving screen incase missed anything.Even taking kids to and from school was stressful,even though only took 10 mins I had to get m8s to copy paste posts while gone, bad days I called them from playground to check.Had no time for shopping ironing etc.cooking involved me taking laptop into kitchen with me.I remember many nights sitting on floor leaning over the chair because of pains in stomach side and back knowing would be better if just lied down.Just couldn't!!!! Not saying this is whats happening to you just trying to stress all side effects arnt about losing thousands,cross dressing going with prostitutes.I feel neglecting kids and putting lives at risk cos of lack of sleep sometimes would drop off when driving are bad.This wasnt my only side effect I had others to.
It was from reading posts on here and chatting to some friends I had met on here I knew had to come off mirapexin.One of my friends who had had side effects from another DA called and spoke to my gp for me before I had my appointment with him.My Gp was very understanding he agreed I should stop mirapexin,he also agreed to letting me start taking entacopone I was already on sinemet at the time.He wrote letter to neuro asking for an appointment with her and explained situation.
I don't know what your gp is like but maybe worth having chat to them.Also I have found helpline on here helpful.
You said neuro closer to you not taking new cases,sorry don't understand system can you ask to go on waiting list?Don't know either if you where to have a private appointment would in increase chances of getting to see them on Nhs ?
Since stopping my DAs I am not addicted pc I put kids first also I get SlEEP.
Really do hope things work out for you,try and keep strong.
Take Care Dot x
It was from reading posts on here and chatting to some friends I had met on here I knew had to come off mirapexin.One of my friends who had had side effects from another DA called and spoke to my gp for me before I had my appointment with him.My Gp was very understanding he agreed I should stop mirapexin,he also agreed to letting me start taking entacopone I was already on sinemet at the time.He wrote letter to neuro asking for an appointment with her and explained situation.
I don't know what your gp is like but maybe worth having chat to them.Also I have found helpline on here helpful.
You said neuro closer to you not taking new cases,sorry don't understand system can you ask to go on waiting list?Don't know either if you where to have a private appointment would in increase chances of getting to see them on Nhs ?
Since stopping my DAs I am not addicted pc I put kids first also I get SlEEP.
Really do hope things work out for you,try and keep strong.
Take Care Dot x