Hi , Im Jo and im 47 . I have just received my first neuro appointment to see if i have parkinsons. I have lots of symptoms including a slight tremor, balance issues , memory issues , leg cramps , insomnia etc. I was just wondering what happens at your first appointment. Thank you Jo.
Hi Jo1975, just came across your post, welcome to the forum. I would say (and from experience) different consulants, hospital trust and a different experience, would expect a review of symptoms, how these affect you day to day, clinical examinations, reflexes etc,maybe watch you walk. What I would suggest if you can take someone with you, and if you can an overview of your symptoms above so when did you notice the tremor, when do you get the leg cramps, you mention balance issues, have you had any falls? Whilst this may seem a lot of questions the more information you can give the consultant at the initial appointment, how this affects you, when and the frequency the less you have to worry about after you have left and have a ‘oh I should have told him this moment’ (hope this makes sense). In the earlier days I kept a small journal and just made notes, particulalry when I started medication. My initial consultation was around hour and quarter, and left feeling quite confused, the was no yes or no and this is very difficult as I went in thinking it was nerve damage, I was referred for a DAT scan and only after subsequent appointments did I have my answer. I guess go prepared with any questions you may have, being new to the forum, it may be worth using the icon search and typing in ‘first neuro appointment’, you will be able to see other posts. If you don’t understand ask the consulatnt to repeat, The waiting can be a worrying time, but hope you are not kept waiting too long, hope all goes well
As @AnaElsa has suggested, write down a list of things you may want to ask, this is also a good idea for future appointments so that you are prepared & don’t forget to ask something which may be of importance to you. Go in with an open mind.
There are lots of neurological conditions that can mimic Parkinson’s. Although there is no definitive test for Parkinson’s disease there are tests that can rule out other conditions. Parkinson’s is often diagnosed by symptomology alone as described above. Make sure your neurologist keeps an open mind on your diagnosis at this point and refers you for tests which can often rule out the other possibilities DAT,MRI scans etc. Increasingly stretched NHS resources often encourages a wait-and-see approach which at this point may not be the optimal approach.
You will probably be anxious about your first appointment, understandably so, but there is nothing to worry about in terms of what actually happens. You will be asked a lot of questions about your symptoms and general health and the more information you can give the better so as has been suggested it is worth taking a bit of time to note down your symptoms with any detail that you can think of. It is worth doing a copy for the consultant to have as well as keeping one for yourself - as AnaElsa and cruise controller have both said this can help with all consultations, as well as noting down any questions you may have - your brain can often go blank at these times and it is easy to forget something.
There will also probably be some physical tests and these usually include watching you walk, patella reflexes, touching your thumb to each finger and the push/pill test where you stand with your back to the consultant they put their hands on your shoulders and pull back - this is to see your balance.
It is worth noting that you may not be given a definitive diagnosis at this first consultation, they may ask for some scans to be done and in some cases it can take a bit of time before a diagnosis can be given. Waiting for a diagnosis can be a very difficult time but if forewarned it might happen hopefully it won’t be so much of a shock.
I hope all goes well at your first appointment.
Thank you to everyone who replied . I had my first appointment today and left feeling a bit confused.Dr asked me about several symptoms that I have . My tremor wasn’t really present when I was at my appointment but it had been earlier in the day. He noticed less arm swing on right side during examination and right side stiffness. He has suggested a six month review at this point . He did mention Parkinsons a few times but didn’t say if he thinks I have it , confused now
Sounds almost identical to my first visit in 2019, tremor didn’t exhibit on the day, but neurologist noticed slowness and stiff walk on right side so suggested 1 month trial on low dose of madopar. If this made me feel better then the evidence would suggest I have Parkinson’s. This was the case and the last three years have shown that I do have Parkinson’s so if you are looking for clarity this could be a direction to go . All the best
Hi @Hemyock , thanks for replying. Dr said he doesn’t want to start any sort of medication just yet as he hasn’t really given me a diagnosis at this stage . Will have to wait and see what he thinks at next appointment. If you dont mind me asking what other symptoms did you have ? Thanks Jo
Jo1975, sorry about the delay replying but firstly a six month delay like a long time to leave you in limbo. When I went to the neurologist my symptoms were no typical right hand tremor, slow walking gait and stiffness in right arm and tensed right hand. These were the symptoms he looked at but also tested my reflexes. I also had issues with my handwriting. Anyway I thought his idea of testing whether a low dose course made a difference was a good one. I must say I think to leave it six months by your doctor shows a lack of compassion and understanding.
Your symptoms seem similar to mine , My walking pace is much slower, handwriting is smaller and can be hard to read , tremor on right, less arm swing , also some balance and memory. I could go on but don’t want to bore you to death . I felt 6 months was a long wait , if my symptoms get worse I will try and get a nearer appointment. Thank you for replying.
Just to say, I am in your boat : )
I have similar things to you. Undiagnosed. Have seen a neurologist a couple of times over the past couple of years. I am 52.
My mum has had Parkinsons for 20 years so I am experienced on the topic, having lived through it with my mum.
I am on HRT which did help with some symptoms to be honest. For me, it’s difficult to untangle what can be menopause and Parkinsons as they seem to be happening concurrently. I have similar symptoms to you though. You are not alone.
Hi , thanks for getting in touch. I had my appointment and received a letter from the consultant which said he believes my symptoms may be early signs of parkinsonism and also maybe lewy body disorder, have to go back in 6 months. Have been given anti depressants from GP so maybe they will help with my sleep problems. HRT is a god send for me . Thanks for the kind words.