Hi Richard I've sent you a private message
Hi Maddison
Hope your ok, I'm on ropinirole XL slow release 14mg, I've been ok on this higher dosage, I know no two people are the same on these meds, but I'm happy on this one. Infact when I need to change for any reason I would'nt know which one I would prefer to switch to, there are so many side effects with most other meds.
All the best - Sheffy
Hi sheffy i'm ok Hope you are too . when I incease the ropinerole I feel really nauseous but it does settle down . Last time It took about three Weeks which was hard at work . was trying to wean myself off the domperidone ! Some symptoms are much better but I still have a lot of pain In leg and shouler ( have a tear finally had a scan after 4 years off shoulder trouble and conservative treatment.Are you feeling better than You Were .I know You Werent feeling so good Couple of weeks ago ?
Hi Maddison
Still feeling a bit ropey, walking main problem with legs feeling wobbly and weak, beside a couple of other things. Contacted my PD nurse but I think she is a bit bogged down at the moment, was asking her to put my meds up another 2mg which usually does the trick, she wanted to see me first but can't see me till Sept 3rd........might as well wait to see my neuro on Sept 9th!!
I don't seem to have any problems when my ropinirole is increase, it just goes to show how these meds affect different people in different ways. Are you on any other meds besides? If so what are you on and how are you affected by it? Just want to get a bit of an insight to other meds for parkinson incase my meds need changing.
Sorry to hear you have been having a lot of pain, I hear that is prolific in a lot of parkinson sufferers, I just get a lot of aching in my muscles, but hey ho, apart from that we seem to suffer in silence don't we, and carry on regardless........just keep smiling!
Nice to hear from you.....Sheffy x
Hi all,
I am curious to know how often I should see the neuro. I was seen in June, told to book in 4 months ahead, but can`t be fitted in until end November. I have a great GP, but what do others think? How often is reasonable?Thanks Maddison for the really helpful encouraging comments.
All the best,
Frances
hi Frances
i was supposed too see my neuro after 4 months(feb) but it turned into july(8 months) my next appointment is in 4 months but i'll read that as 5-6 months it has always been a longer time span than given with the neuro, i have seen the PD nurse 3 times since last october and i see her again next month.
Appointment time with the neuro always seems brief, but more in depth with the nurse
Hi francis and sea angler, your both pretty lucky in seeing you neuro as often as you do. I only see my neuro every 12 months, and thats been the norm from day one, was DX in 2011 but had problems since 2010. In fact my appointment was for June 2015 then cancelled till August then cancelled until September now!
Roll on ..............Take care......Sheffy
Hi Frances initially I was seeIng somone quite Infrequently . PD nurse was seven months Neuro one year . I am now under Kings (referred because of young onset ) I am now going to be seen by neuro every six months and new PD nurse hopefully inbetween which is great .My neuro at Kings was fantastic. I felt so much better for seeing him .Hopefully new nurse will be the same as my old PD nurse sadly I felt was not very supportive. Best Wishes
Hi Sheffy sorry you have been feeling rough.It seems a long tIme to wait until sep . If you feeL worse I would ring nurse again.
I take ropnerole 8mg
Azilect 1 mg (are you on this ?)
Vit d 800iu daily . My level has been low since diagnosis and they think i may have bone pain ?Not on anything else apart from painKillers . x
Hi Kitten3 - I too wake with the internal tremors and that is how i describe it - as if I've had a bad shock or a nightmare and the feelings don't subside. My internal tremors are my worst symptom - I walk well and look OK, but unfortunately that is not how i feel. I appreciate very much how you are feeling waiting for an appointment - if I were you, I would keep calling to see if there has been a cancellation. You are your number one priority and it can't hurt to ask. Don't worry about being a pest! I hope that medication will be prescribed and will be of help. I am not stable yet, but appreciate it's a long job to get to a stage of feeling "reasonably well". Good luck!
hi doglover
thanks for answer ..its a on old thread from me. im now on sinemet and requip . my consultant said i had been missed by gp for about 5-6 yrs so needed alot of catching up with my meds so gone up quite quickly to get effect i want .ie being able to work and exercise . plan is baseline of sinemet 100/25 three times a day plus slow release sinemet at night and add in other drugs to make my body use it . so am on 22mg requip ..have no side effects apart from few days of dizziness when increase with plan to add in selegiline next to even out the ups and downs . also starting pd warrior course .
can most days manage 12 hrs at work and have v little tremor .all in all back to "normal" .have off times when struggle to walk but can cope with them
You sound very positive and that's the sort of attitude that gives hope to those of us who are still struggling. I know I need to make it clear to neurologist, nurses etc that my internal tremor is positively evil and, because it can't be seen, my word must be heard! Good luck and keep well
Hi Maddison
You were asking if was on any other meds, no I am not, I have been on ropinirole since being DX in 2011, but I think that may change when I eventually get to see my neuro! I've done quite well on this med, I don't really want to go on any other, but I think I will have to eventually.Do you have any side effects with Azilect?? Thats the bit i'm bothered about with changing meds!
Regards - Sheila
No side effects . Hopefuly its neuroprotective and I believe can complement other meds X
Hi all, just wondered if anyone has been prescribed Propranolol if so how did you find it ?
yes i was before got diagnosis as GP thought it was essential tremor.... it didnt do anything !
I was diagnosed with essential tremor, prescribed propanalol, which made me feel awful. Was prescribed Sinemet in June. Many of my worst symptoms are much reduced. I have an appointment at the end of November, presumably to review medication. It`s now clear that the symptoms I had so strongly especially the tremor are to do with Parkinsons. My brain scan was clearly abnormal this time---nothing showed 3 years ago.
Like all of us, I am trying to adjust to the diagnosis.
Good luck and best wishes
Frances
Yep i was prescribed 'propranolol' as i said in your other thread/post.
It not really a PD drug as your prob getting the idea although in some cases essential tremor it can help with tremor.
And as also said else where he might prescribe you a PD drug too aid in diagnosis if its helpful in your symptoms.
Aside from Sinemet, Madopar and Entacapone (that I can think of) all the drugs used are not exclusively PD drugs.
I used to think that all medicine was specifically designed for a particular ailment. Not so.
Personally I think the use of anti depressants as a treatment for pd is not a good idea as there are interactions between the Tricyclic and SSRI types and also with selegiline and azilect.
My advice is get informed about your medicine.
Your GP is in charge of your medication and should check for interactions between medicines he and other specialists prescribe you.
This is not always the case.
It is well worth speaking to a pharmacist for advice as well as your gp.