I’m seeing a new Neurologist tomorrow. What do I tell him, what do I ask him ? I have actually chatted a bit about this subject, but I think my heading was wrong. The heading was “Some advice please” & I only got a couple of replies.
I think it is an important topic as we all [eventually] get to see a Neurologist but probably don’t make the most of this once in a year opportunity.
I think I have had Parkinson’s for about 8 years but only diagnosed in June 2023. When I moved into the area where I now live 5 years ago & went to the GP practice I was going to use & saw the head GP. His first question to me was how long have you had Parkinson’s? I told him I didn’t have Parkinson’s.
In the past 30 years in work & in sport I have had extreme stress related issues where I froze & started shaking. Playing Field Hockey 10-15 years ago I could not stand still I had to sit down. Running full out was not a problem but standing still was. Then there was the time playing golf where I was told I had to hole the one inch birdie putt rather than being “given it” as was the custom in Florida where I played. My arms & hands were frozen & it took me 3-5 minutes to be able to walk up to the golf ball & put it in the hole. Clearly some sort of stress must be an issue with me. At Indoor bowls I cannot carry a plate of food or a cup of coffee, at home I usually can but not always. If I have an ex golf guest in my flat I cannot carry a mug of coffee to the table for him
as I am shaking too much.
Today I’m not playing bowls so this morning I did my 200 yard walk. I walk normally, striding out, I walk quickly & my arms swing as they should, I carry a walking stick but don’t use it. I finished the walk exhausted with my shirt damp despite the cold day. I thought I’d unload the dishwasher & had 3 dinner plates, 2 side plates & a pudding bowl in my hands but I couldn’t move my feet which were frozen to the spot so I put the plates down & will move them later.
With sleep it is like putting a battery on overnight charge. In the morning you should have a fully charged battery,. But I don’t & seem to conk out having done very little.
I cannot do my 200 yard walk & play Indoor bowls the same day, it has to be one or the other, not both.
I strongly feel my sleep issues are caused by the pills I take. But the pills I take help my gait freezing etc … I also get severely dehydrated often.
The thing that brings on my gait freezing is either standing still for 2 minutes or sitting in a chair for a short period. Sitting up in bed is the only comfortable place for me to spend my time. So I stay in bed all day unless I am cooking myself a meal. If I want to watch TV I find lying on the settee also works for me.
Which Parkinson’s do I have ? The original diagnosis was
Atypical Parkinson’s [Parkinson’s Plus].
Damn, I am sorry, it seems as if there may be one or two other aspects mixed up with your health.
Honestly, I think the best you can tell him/her is exactly what you have detailed here.
Sorry I cannot be of further help.
My good & experienced male Parkinson’s nurse knows the neurologist I’m seeing & says he is the best. I am to report back to him with what the neurologist says.
Hi Steve,
I’m still very new to being diagnosed so not speaking from any experience but did hear on the Parkies in a Pod - podcast with a Nero that when you see your neuro you should really focus on the main 2-3 issues as they can deal with a few thing but can get overwhelmed if you highlight too many issues.
Hope your appointment goes well.
Thanks
Hi Steve, if by chance you do see this message before your appointment, do you keep a diary of your symptoms, a short overview of how you are managing, what you are comfortable doing, side effects of meds, any patterns, particulalry sleep and any delays in taking meds. Then talk through with neurologist and get their thoughts? I’ve found this really helpful, particularly, as I tend to forget something, gives them an idea/picture of a typical week/month and what strategies work for me. Hope this helps if not in time for your appointment this time but maybe the next one. Good luck
Good morning AnaElsa … Thanks for your replies & excellent advice & yes, today is the day I see the neurologist [1.30pm]. It is about an hour in the car & I plan to arrive early.
In reply to your question … Yes I did keep a record of how the day has been in my diary but I stopped doing it. Not sure why, perhaps just too much information to make any sense of it.
I live for playing Indoor Bowls, it was golf but I can no longer play golf. I am ultra competitive & always have been. I love the feeling of winning & playing well. I do keep a record of how well I play each day & whether my team has won. If I’ve played well then nothing else really matters. I might have slept really badly the night before but if I’ve played well then I’m ok with that.
As a rule this past 3 months I have slept badly. I take Camazepam & Melatonin to combat my nightmares & poor sleep, but taking both pills makes me feel very tired the following day at least to start with.
I am quite good with taking my medication but the time I take it can vary by an hour or so.
I am worried about flooding the poor man with so much information as everything seems to be connected. Does the medication I take cause my fatigue OR does Parkinson’s cause my fatigue. Why can I only walk 200 yards today when 2-3 years ago I could easily walk 10 miles?
Good evening everyone. I saw the neurologist this afternoon. He was exactly how you would imagine a neurologist might look, or a University professor for that matter. My sort of age, Medium height, goatee beard, smart black suit & black dickie bow tie. A very impressive individual who spent a lot of time with me doing all the tests we are all familiar with, which of course I have had done before.
He has software on his computer that listens to our conversation & pulls out all the relevant facts & sends out an email with the diagnosis etc. Saves having a secretary he said. Not sure whether he said that the computer software actually comes up with the diagnosis having heard the answers to the questions he asked me.
The big news to come out of my appointment today was that I might have been misdiagnosed by the neurologist / NHS locum from Armenia, who specialised in neuropathy, who diagnosed me with Atypical Parkinson’s in June 2023.
Although I have a few Parkinson’s symptoms, they are fairly marginal ones.
He thinks my symptoms indicate damage to my spine & he will want me to see a spinal specialist consultant he knows. He still has to look at the three scans I had done two years ago. Firstly the datscan of my brain which I was told was positive for Parkinson’s, also the mri brain scan that had age related damage & my Mri spine scan that showed age related damage / Spinal Stenosis.
I am fairly certain that the Sinemet I take has improved my gait freezing symptoms.
I have a morning or is it mourning telephone conversation with him tomorrow after he has looked at the various scan results from June 2023.
What do posters think to this ? Is this good news or bad news ?
Obviously I will find out more tomorrow & will let everyone know.
Hi Steve, just catching up on your posts. I understand the last thing you need is to be concerned about as you say ‘flooding the poor man with so much information’, down to personal preference, but this for me works well. I’ve had a couple of appointments and came out realising I had forgotten to say something. I try to give a full picture of everything going on, like you have mentioned, is this a symptom and something that comes with PD or a side effect of medication and wearing off? Unfortunately, it a case of trusting their judgement too isn’t it. Good to read you read you enjoy an interest and getting some physical exercise too, I think that’s important isn’t it?
Reading your second post, wow, bet this was a bit of a suprise moment? Very frustrating though, that he hadn’t had chance to review your scans prior to your appointment? You say you have noticed a difference with your Sinemet improving some of your symptoms, I’d agree I felt the same with mine and that’s good. As for good or bad news? You’re being treated and your meds are working? Please let us know how you get on
Good morning Ana … I had a very long letter from the neurologist last night. He still hasn’t seen the actual scans but he has read the reports from the neurologists who saw the scans. He thinks I have a lot of medical stuff going on and it is difficult for him
to know what causes what. His theory is that my Vascular Parkinson’s is mild & the gait freezing is a spine issue interacting with the Parkinson’s.
So I have cut down the Sinemet from 6 pills a day to 3 pills a day and next week I will stop taking them entirely. This is a big step for me. A leap of faith so to speak.
He uses an Artificial intelligence app on his computer. It filters out all the general chit chat out and notes down all the relevant Parkinson’s answers I give. He was very keen that I only answer the questions he asks me and not give him information he didn’t ask for.
I am bowling in a league match today at 11am so I will have an idea whether taking less Sinemet makes a difference. Perhaps a bit early to say as I only went to 3 pills last Thursday.
Currently on holiday and just caught up with you posts. It sounds as though you have a good neuro and I am sure he will be able to properly diagnose all that is going on with you.
I hope you get an early apppointnent with the other consultant who can add the other pieces to the jigsaw of your health. You may need to speak to Benenden so that they can confirm that they are happy for you to see the spinal consultant. They do not cover consultations with all consultants - something to do with a BUPA list.
As well as my PD I also have moderate Cerebral Small Vessel Disease!
Hello Douglas … Thanks for looking in on me on your holiday, most kind. The new neuro has not seen the three mri scans themselves but I did send him the Neurologists opinions on the scans, which I have posted somewhere.
I do feel I am going round in circles. I have my todgerectamy [cystography] a week tomorrow in the Urology department at Eastbourne hospital.
