Viewing 12 reply threads
  • Author
    Posts
    • #15608
      Jean Mellano
      Keymaster

      I see my neuro every 3 months (still trying to get my meds right).  I also see a Movement Disorder Specialist once a year.  How often do you see your doctor?  Is he/she a Movement Disorder Specialist?

    • #15656
      Manuel Fernandez
      Participant

      I get appointments to see my neurologist ordinarily every six months. We all have in Italy a family doctor available five days a week and she/he can request a special neurological appointment at any time  she finds it necessary.

    • #15659
      Jean Mellano
      Keymaster

      thanks for sharing Manuel.  it is good your family doctor is so available. I imagine your family doctor treats the person vs. the ailment.  we have some doctors like that here in the USA.  my primary care doc. is like that and she knows me well 🙂

    • #15692
      Lou Hevly
      Participant

      I see my neurologist twice a year. But at the moment my symptoms are stable, so there really isn’t much reason to see him. Also, once when I wanted to change my meds, I carefully explained why in an email and he made the prescription change for me.

      • #15708
        Jean Mellano
        Keymaster

        lou, stability is good… i wish my neuro used email… i have to go through his assistant to get a message to him and the time for leaving a message is never long enough for what i have to ask or say to him..

    • #15693
      Juhan Vakker
      Participant

      kord aastas

    • #15707
      Jean Mellano
      Keymaster

      hi juhan, what did we do before google translate?    translating from estonian to english, translate says you see your neuro once/ year.

    • #15964
      Gail Dons
      Participant

      I’m fortunate to live in a city rich with movement disorders centers, so I don’t have a neurologist, just my MDS. I see her every 6 mos, but the Portal works well, usually getting a response from my doctor or her nurse within 24hrs. Last summer, I worked in Africa for 6 weeks, and when I had some problems with my meds/symptoms I was able to communicate with my team and adjust my meds from thousands of miles away!

      • #15978
        Jean Mellano
        Keymaster

        Gail, that is technology at its best!  And it is great that ur doctor or nurse gets back to you so quickly… I wish I could say the same for my neuro.

      • #15979
        Jean Mellano
        Keymaster

        Gail, that is technology at its best!  And it is great that ur doctor or nurse gets back to you so quickly… I wish I could say the same for my neuro.

    • #15967
      George Kapetanakis
      Participant

      Every four months

      • #15976
        Jean Mellano
        Keymaster

        George are your symptoms stable and have u found the right “cocktail” of drugs to stabilize yourself?

    • #15715
      Juhan Vakker
      Participant

      kord aastas kutsub tagasi kontrolli mis kestab 15 minutit.mul on parkinson.Praegu on Sinemeti tarne raskus,ei tea mis edasi saab.

      • #15721
        Jean Mellano
        Keymaster

        juhan,

        that must mean your doctor thinks you are stable and perhaps your disease is not progressing too quickly.  i hope you continue to have such stability.

    • #15981
      Robert
      Participant

      Howdy Folks,

      I am in my first year and 11th month of taking meds.  I will be having my 6th visit with my MDS neurologist in a few weeks.  We adjusted meds by email twice too.  Have not yet found the dosage and timing that works for me.  I am now familiar with what off times means.  Was it like this for others in their first year?

      Thanks,

      Robert

      • #15982
        Jean Mellano
        Keymaster

        hi robert, I was diagnosed in 2015. I am still trying to find the right ‘cocktail’ of meds fo me  🙁   Since everyone’s  symptoms are so different and we all react differently to meds, plus the fact that the disease is progressive, it makes it so difficult to treat.   I hope you find the right dose for you soon.

    • #16091
      Shirley Cypher
      Participant

      My husband sees his neurologist twice a year but in contact with him through the hospital patient portal whenever I have a question.  Works real well.  Joe is 86 was diagnosed in 2018 while in the hospital with aspirational pneumonia.  According to his doctor he has probably had it for 9 or 10 years.  Has some dementia.  All things considered he is pretty stable.

      • #16096
        Jean Mellano
        Keymaster

        shirley, you seem to be such a knowledgeable caregiver, joe is lucky to have you in his life

      • #16098
        Ally
        Keymaster

        I agree with Jean, Joe is a lucky guy. What about you, Shirley? What support do you have in your role as Joe’s caregiver?

    • #16102
      George Kapetanakis
      Participant

      Every four months but might stretch it to six months, soon.

      • #16106
        Jean Mellano
        Keymaster

        george, that is great, i believe the less time in doctor’s office the better

    • #16104
      Jo S.
      Participant

      I was diagnosed in February 2019, and saw the PA three months after that. I was scheduled to see the doctor three months after seeing the PA, but I decided to switch doctors (within the same practice). After I saw her, she scheduled me to see the PA four months later, and then scheduled me to see her (the doctor) four months after that. So for now, I’m seeing either the PA or the doctor every four months.

      I’m much more comfortable with the PA than the doctor (I love my PA), and I can message her through my insurer’s online app. The doctor provided her email address, but I haven’t used that method yet to communicate with her between appointments. I’d much rather communicate with the PA via the online app.

      • #16105
        Jean Mellano
        Keymaster

        hi Jo, I have always had excellent experiences with PA’s.  sometimes i think they are more knowledgeable than the doctors LOL

        • #16108
          Jo S.
          Participant

          I agree, Jean. They also tend to be more approachable and empathic. Honestly, if I could just see the PA, I’d be overjoyed. 🙂

        • #16121
          Jean Mellano
          Keymaster

          jo,

          ditto…and i think they are less stressed and for the most part not burned out yet

        • #16132
          Jo S.
          Participant

          That’s absolutely true, Jean! If I didn’t have to see the doctor again and could just go to the PA, I’d be a very happy patient. 🙂

    • #15712
      Jean Mellano
      Keymaster

      juhan, your neurologist doesnt need to see you anymore? that would make me happy if my dr. did not feel he needed to see me anymore.

Viewing 12 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2019 All rights reserved.

©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account