First Neurologist appointment

My first neurologist appointment for the PD is next Tuesday. It was scheduled for Nov but they had a cancelation and called me. YAY

I asked if I should stop taking the carb/levo before the appointment so the doctor can evaluate the symptoms and the receptionist said no which surprised me. I was diagnosed by my GP who I have been seeing about my litany of problems including tremors now for awhile. He finally diagnosed me by starting me on the carb/levo and seeing that it had wonderful results.

I hate the idea of going off the med for any time at all, but how can the doctor do an evaluation with my symptoms being suppressed?

Please tell me what to expect at this first visit and what do you think about me staying on the carb/levo for the visit.

19 Replies

  • I've never heard of any neurologist wanting someone to go off the meds. That would be pretty hard on you. The neurologist is trained in being able to check our symptoms, meds or no meds. I remember being so relieved when the carbidopa-levodopa work for me because I knew if it didn't I could have something a lot worse than Parkinson's. We are lucky in a crazy sort of way. Good luck, keep us informed.

  • That's good to hear that it is normal to stay on the meds when you see the neurologists. I totally hate the idea of stopping them even for a little, they have made me so much more comfortable.

  • In fact, it is rare, but to stop meds too quickly can result in what I think is called Neuroleptic Malignant Syndrome (NMS). This, as said, is rare. But also potentially fatal.

  • They just ask loads of questions. It may be useful to write down all the symptons you have had before and after meds, as it is easy to forget when you are with them.

    But if you are responding to meds then the diagnosis is probably simple!

  • I've gone over the symptoms so many times with my GP I can recite them in my sleep. But I guess writing them down is a good idea so I don't forget any.

  • Yes, I do this, because although I know the symptoms like the back of my hand, under the pressure of seeing the neuro, I forget. But more importantly- take a pen and paper to write down what he says!

  • Just relax and enjoy your new self. Many people don't get great results like you. I see my neurologist fully medicated. It does not matter what symptoms you have only the fact that you are doing well. You will most likely fill out paper work and write down your symptoms anyway.

    Good luck

  • I will send you a PD Symptoms list that you tic off and then take to your doc. I will need an email address. You can send request to

  • Thank you so much. I will e-mail you now.

  • Could u send it to me

  • I'm guessing that the neurologist will be very happy to hear that your meds are dealing with your symptoms well. That's all they are trying to do too.

  • They probably won't know about this because there is no money to be made by big pharma. This is probably one of several ways to catch these diseases.

  • I looked at both these links and they are about a mile and half above my head. I never thought of PD as a disease that one catches. More like a disease that happens (for reasons known and unknown) like hypothyroidism and diabetes both of which I deal with.

  • There are genetic forms of these diseases and then some ppl without the gene catch it. We got our genetics tested and no-one in my fam has the gene.

    I showed that link to my dads neurologist yesterday and she'd never heard of any of it. The guy leading the research, Dr Paul Alan Cox, was part of the team the found the treatment for hiv in tree bark. They are the only ppl to replicate amyloid plaques and tau in the lab through diet using little monkeys.

    All diseased (every single one) human brain tested positive for BMAA toxicity. They tested ad and PD I think. The also linked it to my dads disease (PSP) through hair samples. All non diseased brain samples tested negative.

    Give the links to your neuro and see what they say.

    My dad is taking about 10 g a day of l serine. Not that there's been a difference. He's pretty miserable with good days and bad days.

    Good luck.

  • Thank you. I do have a family history of PD. My cousin and Uncle on my mothers side.

  • I would stay on the meds, if he doesn´t want you on them he can always advice you to stop and return at a later date. Are you seeing a Movement Disorder Specialist or just a Neurologist, big difference

  • Yes I've heard there is a big difference, but I live in a very rural area in Arkansas and I would have to travel to see a Movement Disorder Specialist. If the neurologists suggests that I do, I will see about it, but I don't think my case is complicated and I have no problem trying a regular neurologist first.

  • I think the Neuro Aung let go of you. Search around and see if you can find a close center. Remember that all pwp are different and require different handling. Remember PD is progressive and for the rest os life without killing.

    I live in panama where there is no movement disorder center just Neuros. I am selling my house and moving close to a center probably to Arizona

  • Hi. I agree with you. Levodopa does nothing to slow down the progression of Pd, but it can, and in your case it does, mask some of the symptoms of Pd. Whether you take it or not, it does not affect the speed at which your Pd is progressing. I was personally taken of Sinement and put onto an MAO-b inhibitor with no ill effects. So you are free to take your own decision on that one.

    Have you read what fast walking and CrossTraining can do for your Pd? If not, have a look at my website - It costs nothing.

    Good luck with your appointment.


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