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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?
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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 🙂
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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.
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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..
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hi juhan, what did we do before google translate? translating from estonian to english, translate says you see your neuro once/ year.
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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!
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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.
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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.
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George are your symptoms stable and have u found the right “cocktail” of drugs to stabilize yourself?
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kord aastas kutsub tagasi kontrolli mis kestab 15 minutit.mul on parkinson.Praegu on Sinemeti tarne raskus,ei tea mis edasi saab.
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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.
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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
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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.
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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.
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shirley, you seem to be such a knowledgeable caregiver, joe is lucky to have you in his life
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george, that is great, i believe the less time in doctor’s office the better
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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.
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hi Jo, I have always had excellent experiences with PA’s. sometimes i think they are more knowledgeable than the doctors LOL
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jo,
ditto…and i think they are less stressed and for the most part not burned out yet
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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.
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