Hi all, My first time posting here & I suppose I’m after some advice & opinions.
My problems started about 7-8 months ago with a leg issue. I would thrash violently whilst asleep & only when asleep, it didn’t wake me but did my partner. Similar to restless lest but only happened whilst asleep. After lots of research & GP contact between us we decided it was something called ‘Periodic Limb Movement Disorder’ though the sleep clinic (I also have Sleep Apnoea) I managed to get a test done in December but still now awaiting results. Further to this I have had numerous contact with GP concerning other symptoms including: severe stiffness & muscle pain, problems walking & balance issues, insomnia & nausea, fatigue & brain fog etc I don’t have a very noticeable tremor but do have a feeling of shaking all over (if that makes sense) I have eventually managed to get a referral to a Neurologist but this is in review until 25th April! For information I am a 57 year old male with a few other health issues. I am getting to my wits end & am struggling to cope with all the symptoms & all the GP says is ‘I can’t give you Parkinson’s Meds’ which I understand. I have got some Codeine & Anti-sickness pills but they don’t help much. Any comments or advice would be much appreciated. Thanks in advance.
Hello MrWilfy,
Unfortunately it is extremely difficult to accurately diagnose Parkinson’s, and symptoms differ among those who have it. We always recommend directing medical questions to your doctor and medical team, but we also have a free and confidential helpline team that can connect you with local support as well as providing a number of other services. You can reach them on 0808 800 0303.
Best wishes,
Jason
Forum Moderator
Hello
I didn’t want to scroll on by in case I could help. My mum has had Parkinsons for 20 years since 2003 so I have lived through it with her. Some of the symptoms you describe are similar to what my mum had. She had bad dreams for years, where she would kick out and lash out. Equally, as Jason said below, it could be something else. The Neurologist is really the only person to help. I know it seems a while away at the moment, but it is about a month away. The best thing I can say is, try not to worry (easier said than done), and wait to see what the Neurologist says.
sounds like seeing the neurologist next month will help. Lots of what you raise does sound PD like but there are other conditions somewhat similar. all the best and if it is PD you may find like many of us that things are manageable.
Hi All,
Thanks for taking the time to read & reply to my post.
Things hear have taken a turn for the worst, the Neurologist reviewed my referral & refused to see me even though it was them that told my GP to refer me in the first place! I don’t know the reasons behind their decision to not give me an appointment at the moment but they have written to my GP, I’m just waiting for them to let me know, chasing doesn’t seem to help much.
In the mean time my Doctor has prescribed Ropinirole, I have just started them & so far they seem to be helping a little with balance & co-ordination although I do still have stiffness & pain, maybe this will improve as I am still in the stage of slowly increasing the dose.
Anyone’s experience with Ropinirole would be welcome.
Thanks in advance for taking the time to read my posts & comment.
MrWilfy
Hello
I was taking Ropinerole (Requip) when I was first diagnosed with PD last year.
I had terrible side effects including sleep attacks in the middle of the day and where I would need to sleep immediately including when I wa,s driving or at work.
Have you considered seeing a movement specialist neurologist privately who also works for the NHS. After many years of misdiagnosis, my GP fobbing me off and having this internal tremor, I finally had had enough and booked a private neurology appointment with the NHS neurologist. He saw me and said straight away that I had PD and a DAT scan a month later further confirmed the case. The initial diagnosis can be problematic but fight on. (It took me 5 years of going to the neurologists to get the diagnosis.) My Symptoms: headache, fatigue, some stiffness, nightmares, REM sleep disorder, brain fog and processing skills and the internal tremor that you describe.)
I hope you get it sorted soon.
Best wishes
Andrew
Hi Andrew,
Thanks for your reply.
I have read about the side effects of Ropinirole but thankfully so far I am side effect free, haven’t got to the full dosage yet though!
I have thought about private care but finances don’t allow at the moment. I will keep fighting on no matter how difficult it is with a totally broken NHS.
Thanks again.
William
Hello Andrew, it is my husband who has Parkinson’s. I picked up on your post, as you have referred to Ropinerole and had experienced severe side effects. My husband was on this drug for about four years. He was diagnosed with PD seven years ago. Initially he was doing well and Parkinson’s didn’t have too much effect on our lives. But in the last year he’s not been too good. He was always falling asleep during the day and was increasingly becoming confused. After yet another fall at home and being hospitalised as a result, the consultant decided that he should stop the Ropinerole (He was on 8mgs a day by this time).However, this was done far too quickly. Only titrated over 5 days as he recommended, which I later learnt was far too fast for this drug and subsequently he had the most awful withdrawal effects. He did notice despite feeling so dreadful coming off it, that he wasn’t feeling ‘drugged’ most of the day and excessively tired. His cognivity seemed to improve too. I did post about this several weeks ago as I wondered how others had experienced taking this drug and how they were when it was stopped. Best wishes Jean
Hello Jean
I came off Ropinerole slowly over 2 weeks and was then introduced to Sinemet. Initially the change made me feel brilliant almost euphoric but the day time sleeps returned after a few weeks and the euphoric feeling soon disappeared and replaced with fatigue and brain fog. The sleep attacks have now past and I feel more confident that I can drive as certainly Ropinerole was putting me at risk.
Currently on Sinemet but I have to live with the day time sleeps.
Andrew
Hello Andrew and thanks for your reply. Did your consultant recommend slow withdrawal of Ropinerole? I know that my husband was taken off it far too quickly but what’s done is done. I’m glad you have found some benefits from stopping the Ropinerole and wish you all the best. Jean