This forum is for those who are in the process of finding out whether they have Parkinson's, or dealing with a recent diagnosis. Here, you can share experiences, questions and feelings with others who have been in a similar situation.
Please remember that though posts on this site can be very helpful, they are the opinions of individuals, and are not the views, policy or advice of Parkinson’s UK. If you would like expert advice, contact your specialist, GP or Parkinson's nurse.
I have just been diagnosed, after having a Datscan to confirm Parkinsons.
My consultant thinks I have probably had it for 5-7 years.
I had previously thought that my increasing difficulty in walking etc was down to advanced arthritis, having already had two knee replacements and then breaking my hip earlier this year. This was treated conservatively as it was three weeks before we realised it was broken.
I wanted a proper diagnosis as I like to know exactly what is going on. I have now started anti-nausea medication before taking the proper stuff after another 3 days.
I am feeling quite positive about the situatiion, having confdence in my consultant. At the age of 82 I mean to make the most of what is left. So, here goes!
Hi All
I’m new to this forum and new to Parkinson’s too. I’m just hoping to get some feedback / further info from fellow sufferers to help me understand what’s going on!
I was diagnosed with “Probable” PD at the end of Feb. The neurologist put me on what he called a “baby dose” of Madopar (50mg/12.5mg) for one month, then onto double that dose. I’ve now been taking 1 x 100mg/25mg Madopar for about 3 months. I’m not able to discern any positive effects of taking this medication and I really don’t believe it’s doing anything for me at the moment.
I’ve read lots about people needing stronger doses, alternative drug treatments, and even the fact that in some cases, Madopar can take months to become effective. This is in sharp contrast to other comments I’ve read where some people say it’s revolutionised the way they feel.
I currently have no dialogue with anyone about my condition and my only discussion about it to-date was with the neurologist in Feb this year. I have a follow-up appointment scheduled at the end of June which I’m hoping will shed some more light! 4 months between chats seems a very long time!
In view of my lack of apparent symptom relief, I’m wondering if it really is PD or something different (MSA?). I’ve got all the usual stuff going on - occasional tremor (particularly in my right hand) ; strange gait/difficulty walking ; difficulty handwriting ; pronounced lack of strength and stamina ; signs of slurred speech (sometimes).
Any comments or feedback from those who know a whole lot more than me, most welcome.
Hello paul i to take meds for so called Parkinson’s disease ive had dat scan neurologist thinks its parkinsism but not sure 100% i have just a resting tremor in my forearm hand left side no other symptoms wot so ever ime 60yrs young ok i ache sometimes but ime not 30 i take carbidopa levodopa 4times a day no success what so ever 12.5/50 i think this is starter dose i would like to try ultrasound of the brain to pinpoint tremor for myself i have been taking these meds for just 3weeks this covid19 has bugger ed things up i see my neurologist every 12months not good no idea who Parkinson’s nurse is
Hi Paul I have just started on rasagiline 3 weeks ago, however I have no improvement whatsoever? I was diagnosed last year but like you wonder if it is PD as I only have a tremor in my left hand and knee ?
It’s funny I have never had arthritis, but my left hand is swollen and I cannot close my hand ? My hand gets quite painful at times but don’t see the connection with PD ? My smell is good as is my memory so wonder if something else is going on ? The specialist suggested taking propranolol alongside rasagiline, but the information says you cannot drink alcohol. I’m not a heavy drinker and can go days without, but I do like the occasional gin and tonic, so I don’t want to go on this extra medication. Life at the moment is hard enough without taking that pleasure away. I wonder why we all get put on different meds ?
I’m very sorry to hear your not well too. I’m just at the point of diagnosis. I’m due to have DaTSCAN in the next few weeks. I’ve had suspicion for a while something wasn’t right. I recently developed a swollen left hand too, I began to get worse and the tremors have started since in both hands on and off and only at rest. I feel a constant tremor in-side now and a general feeling of unwell.
My low mood is awful and nights are worse with nightmare.
My anxiety has appeared from no where too.
I’ve definitely become more stooped and my children think I have bad posture and look rigid.
Would you mind explaining your other symptoms?
I was diagnosed a week ago , I say diagnosed , but I had a mri which came back normal . Next step was the neurologist who put me through all the motor tests etc and decided he was pretty sure his diagnosis was correct. It all started with a slight tremor in my left calve, I kept shrugging it off but it didn’t go away and now I have slight tremors in my left leg and arm/ hand. The neurologist has prescribed me madopar , but I have decided to hold back on taking them as I feel my symptoms are not hindering my lifestyle as yet, and the side affects of madopar do not look good ! Also I worry about the levodopa not working so well later on if/when my symptoms become worse, due to my body getting to used to it .
Any tips on how to cope mentally with diagnosis would be welcome , I haven’t stopped crying since I I got mine , seems to come in waves without warning
I was diagnosed with probable PD during a telephone consultation during the first lockdown and then as a confirmed case in July this year when I saw the consultant in person. My symptoms started with a slight tremor in my right leg which progressed to my right hand and arm. My right hand and arm felt awkward and stiff when typing, stirring, clapping etc. On diagnosis I was prescribed a low dose of Sinemet which I had to slowly increase from 1 tablet twice a day to my present dose of 3 tablets three times a day. It has made a big difference to my symptoms and my tremor is now barely there and my arm feels pretty normal. I also take a low dose of citalopram for anxiety. The only time I feel worse and the tremor increases is if I am out of my comfort zone or in a stressful situation. Obviously I try to avoid these but sometimes its just part of daily life. I wondered if anyone has any tips for dealing with this.
Hi Woodje,
We wanted to say hello and welcome you to our lovely forum community. You’re sure to hear from our members soon, but also be aware of our website at https://www.parkinsons.org.uk/ and our free and confidential helpline at 0808 800 0303. These are resources with loads of helpful information, and our helpline can assist with all manner of things, from forms and medicine questions to mental health resources to recommendations of local groups and activities.
Again, welcome, and best wishes from all of us here,
Jason
Moderation Team
Hi to all newly diagnosed folk with PD I read with interest all the different meds that you are all on, Don’t forget some of these meds might not suit us all, that is where you PD nurse comes in, she will change your meds, give you higher/lower dose, patches , or even new meds that have just come out and been tested safe, So make your PD nurse your friend, you can also ask her advice on any thing.
Help-please! No chance of seeing a specialist to confirm diagnosis for 6 months.
Hi, my Mother is 77 and in recent months has become more frail particularly she has a shuffling walk if we don’t try to help her by reminding her how to take steps-which she can then do but concerning her and us is her level of confusion and how this affects her mood/how she cares for herself. She has a follow up appointment with her GP tomorrow. (When I took her following a recent fall the dr did half a dozen memory test type questions. Mum did ok but it was hardly demonstrative of the things she’s struggling with (making several cups of tea in our kitchen, finding her way around our kitchen etc). The dr noticed Mums handwriting trail off writing a sentence and a ‘judder’ in one arm when performing a physical examination which the dr says is symbolic of early stage PD. Mums sense of smell has also deteriorated. I’m really concerned that there’s such a long wait to see a PD specialist and wonder if members with experience of this early stage of diagnosis would please give me some advice re how to help mum/prevent her losing more cognitive functioning/possible medication a GP could prescribe and basically anything anyone would suggest that could help in any way. Mum was very independent prior to the pandemic and lives alone. I am very concerned and want to help her any way I can. Thank you in advance for any advice/suggestions I can ask her GP for tomorrow.
