I have just had my latest follow up neurology appointment which I found very disappointing! It was 8 months I last saw this Consultant, uring which time I had had some very frightening symptoms, eg a bang in my head which felt like an explosion!
I also had a list of other things I wanted advice on.
However, on arrival we were told we would be seeing a Registrar and not him. I was a bit upset about this as my letter had said we had an appointment with the Consultant and didn't mention "or a member of his team" which is usually mentioned in this case so we held out for the Consultant who was running half an hour late.
When we finally did get in, he was quiet and withdrawn and his body language clearly said that he w anted it over as quickly as possible he was tired! We were the last appointment so I decided to bring it out in the open and said "I have a list but I can see that you are tired so will go through it as quickly as possible". He muttered it was OK. But when I did get going with my list, he merely wrote it down in my file and didn't talk to me AT ALL about it!
I was getting worried he wasn't going to help me with the main thing which was a very difficult wearing off period regularly at about 2.00 pm which effectively means that I can't usually be out at that time so interferes with all afternoons. He suggested two things, one that I move part of my Requip XL to that time and the second that I tried another medication again which I had already tried and it made me very sick!
I wrote my list because in the past it has been very helpful but how do people handle it when all he does is write it down?!!! Is there a better way I could have handled this?
Written by
Janew
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I see you are from UK so Bailey there is little chance of a separate website. I haven't seen any mention of your Parkinson's nurse so I am wondering what part of the UK you are living. I live near Worcester. NICE recommendations for 1:1 consultation with your consultant are 2 appointments of 15 minutes a year usually spaced 6 monthly. However, in the majority of the country, this is supplemented by 2 appointments with a PD nurse practitioner. They can offer medical advice & support, help with applications for state aid to meet your daily living needs. The two sets of appointments are usually organised so that they fall every 3 months, enabling prompt recognition of changes in your condition. The notes from all meetings are sent to the consultant & your GP. If you need further information or just fancy a chat you can contact me through this site.
The web site is common among Doctors here in north Texas. It is called
Mychart. I can use it to ask for prescriptions refills, appointments, tell my Dr. about problems, ask general questions, add to my chart any thing i feel the need to, anything i enter there becomes part of my medical history. i also can set up a skype appointment if i need to. My Dr. will respond in a day or two.
This helps a lot and allows the staff to help more people.
My insurance does not cover my Dr. so i pay about $250.00 to see him but i can get 15 minutes on skype for $40.00.
I am familiar with the system of 3 month appointment with the Specialist Nurse followed with an appointment in another 3 months with the consultant and it is a good system if it works. However, I left my last consultant when I was told I would only be getting an appointment with him once a year! I checked wit h the new hospital I registered with that I would see the consultant at least twice a year before changing.
However, the theory is not working out in practice. My appointment with the Nurse was about 6 months after the consultant appointment and then the consultant appointment was another 7 months and this was the appointment I have just attended so it was very disappointing! I know that they are all overworked and have more patients than they can cope with, I am aware of cuts in NHS budgets etc etc: But at the end of the day I am just someone with Parkinson's who waits patiently in the hope that some of her questions will be answered when she eventually DOES get through the system!!!
It"s may be if it's a group practice the doctor you saw while a neurologist PK isn't his field of expertise. Had you been there before? Next appointment request you see the doctor you had before.
It wasn't a group practice, it was a hospital appointment with a Consultant Neurologist with movement disorders such as Parkinson's his specialist interest so I couldn't have had anyone with more experience! But thanks for your reply!
As you are in UK I presume your appointment was at an Out Patient Clinic. I'm not sure why you were reluctant to be seen by the Registrar. It sounds as though there was a good reason for the swap. Registrars are highly qualified and belong to the Consultant's team. As honeycomb said, contacting a Parkinson's nurse would be helpful.
I am not, or was not, reluctant to see the Registrar in principle. The reason I didn't want to see her on the day was that I Just moved to this hospital recently and this would have been only my third appointment with the Consultant so I felt that yet another person "on my case" might be confusing and I would like the Consultant to know me better before he passes me on to someone else. Also, my appointment letter said I would be seeing the Consultant and it didn't say "or a member of his team" which it would have done if I was on the Registrar's list. And it rather threw me as I wasn't prepared for it!
I am sorry, and this isn't going to help much but at the Barrows Muhammad Ali Center. I spend at least an hour with my Dr. and I see her every 3 months unless we are making major changes to my brain chemistry, then it's closer to a month and a half. She goes through all of the movement tests. Takes about 20 min. and spend a half an hour talking to me and my wife. I also feel extremely blessed that My Dr. took care of her mother who had Parkinson's so she has the perspective of a caretaker. Maybe that is why most Parkinson's patients take so much initiative in researching so much their selves.
its really unnerving to read all the letters from the UK where patients can't get to see a qualified doctor for months. and this is where we are headed in the US!?! i would like to say, 'just get another doctor' but i think that is not possible there. when you do get another doc (i hope), go with a list of possibles.....a different med (we use Rytary ER to great effect) and the idea of taking a small amount of carbi/levo during the period when you have wearing off. doctors often don't like that idea because it doesn't fit the manufacturer's guidelines and the manufacturers don't like it because it doesn't adhere to their studies. ask his reasoning. he probably has none other than the manufacturer's directions.
my theory is that the pharmaceutical companies must standardize their products in order to test them and don't want any variations. but just like school, different people do different things at different times so not everyone benefits to the max on what is good for the majority. some people metabolize differently than others, have different biorhythms, different digestive patterns, etc. we are not robots, all doing the same thing at the same time. The manufacturers of Rytary, for example, don't want anyone monkeying around with their every 8 hour schedule. but we must! and it makes sense to me why we must....my observation has been over the years that the med is used up faster during exercise and slower during rest (the doctors looked at me strangely when i inquired about that but it is so obvious to me now that i think they are the ignorant ones). so...the med has to be adjusted somewhat to accommodate that. my husbands good time has always been in the am; mine is in the pm. he is energetic in the am and that's the time he needs to exercise. his sinking spells have always come in the afternoon around 4:30-5pm. mine not....i'm just getting geared up. that has been his pattern for life before PD and apparently still is.
here's what we do: whereas he used to take the Rytary every 8 hours at 6am, 2pm and 10pm, i saw that he couldn't last until 2pm....he had been up and about, exercising, and using up the med at a faster speed. so we had to back up to 1pm, then to 12:45. that worked but then that made the hours between 12:45 and 10pm too long. but he needed the 10pm to carry him over the night. true, he wasn't active but still needing it. so i began to give one standard 25/100 c/l at 4:30. it tides him over at his worst time and makes it possible for him to eat dinner without the dreaded nausea that used to come with the loss of dopamine. i thought about using Zandopa again as the booster but he cannot take it in powder form, only stuffed into capsules and now he has a swallow issue, i had to stop somewhere so i just use the c/l little pills.
A lot of doctors are ignorant of Rytary and think it can just be used like any other c/l. We changed neurologists when we moved and the new one did that. I happened to have occasion to call the manufacturer about the prospect of 'breaking' the pills and what medium to use to facilitate swallowing. The first thing the rep asked was the dose. I thought he would come thru the phone when I told him the timing of the dose! He wanted the docs name, the pharmacy, et al. Controlled Furious would describe it. Check it out on the printed insert or go online.
Yes thanks, that IS helpful Donzim. We have it so much drummed into us about how we MUST stick to our times so rigidly that if I have experimented, I have felt very guilty about it!! I mentioned to the Parkinsons' Nurse once that I had changed things around a bit without increasing the overall dosage and he (yes it was a man) was horrified!
I can actually feel an off time four and a half to five hours. The only time I felt an off time before was when the sinemet wore off leaving me rejoicing that I was not having dystonic dyskanitias any more.
When I look back over the years I feel like I have been waiting for appointments and just holding out for some answers and I'm generally disappointed. You can see it is widespread from the questions on here.
The most helpful things I have found are to do my own research and to find one or two trusted and knowledgable people with PD to discuss things with. In the end I work on finding my own solutions and then go to the neuro with some idea about the options there are, I figure with limited time the more ground work I have done beforehand the better. I've also been told to pick the top three outstanding issues to discuss as there is never enough time for more than that.
But it's very disappointing I know, somehow the neuro appointment is about solving problems but it rarely does in the end.
@janeu How very discuraging for you!!!!! These doctors do not have a magic bullet for us. I don't know how you could have handled it any different, except getting angry and demanded he pay attention to you!! We should not have to do that!!
I do not know what to say.
I pray and educate myself on how to use my mind effectively.
I have not been to the doc for a while.I find it exhausting and useless.
Now I do not recommend that. That is just me.
I will go back when I am ready. I use my GP as my doctor, and he is very helpful and truely concerned.
I find a lot of helpful information on this site. I think we should hire Silvestro to be our consultant!! Just kidding of course, but he is very helpful.
Thanks Hikoi and Stargate, for your sympathetic replies. I know that the doctors (nor anyone) do not have a magic bullet to fix all the different problems we face with PD. All I wanted was for some feed back, if only to say that they couldn't help that particular issue and that it was a Parkinson's problem which other people have experienced. Like you, i have found my GP to be very helpful so I will just have to go back to him.
I like the suggestions that I should do my own research and go to the appointments armed with this so it has been helpful for me to raise the issue and I want to thank everyone for their input. Parkinsons' has been described as a "designer disease" because it is different for every person
Rytary is meant to be taken every eight hours, certainly in the beginning. As you can see, we vary that a little bit. If one is on the right dose but it doesn't last, then the dose can be taken more often. I would suggest to anyone not following the 3x a day schedule call Rytary and discuss this with them. If you are taking it more often it may be that you need a higher dose less often. I am no authority but the manufacturers are. Many doctors are not knowledgeable with regard to that particular med and think it can be used interchangeably with regard to dosing and scheduling. It can't.
That's what happen in my case. When I first started taking Rytary. I started taking a lower dose which wasn't working . My neuro increased the dose when I told him and now EVERTHING IS GOOD.
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