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How Often Do You See Your Neurologist?
Since I don’t live near home, I’ve only been to a few of my dad’s neurology appointments. They’re always very informative, which is wonderful.
Most of the time, it’s recommended that Parkinson’s patients go every 3 to 6 months. But a lot of questions come up between appointments, which gets me wondering:
How Often Do You Contact or See Your Neurologist?
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26 Replies
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My neurologist lives in Auckland, 5 hours away from NP. He avails himself every 6-9 mos. on average. I receive a letter from him summarizing the hui within 2-3 weeks after our appointment.
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hi,
last time i saw my neurologist was before corono-virus, i take madopar.
i change my beliefs about life,death,suffering about universe, i change my world.
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Addendum:
I’ve seen my Neuro three (3) times — first for my Dx, then 6 mos. later, then one year later. Our next appt is scheduled in 12 more months.
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As infrequently as I can get away with! It started with a somnologist who was only interested in performing sleep studies as often as he could. Every change in medication required one. I got rid of him but ended up with a dismissive neurologist. My atypical symptoms are related to a brain injury. Nobody seems to be willing to look at the disease outside of the box. I’m sure it’s because I do the research and often challenge them when they give the easy answer. That, and because am willing to get my meds overseas, but it’s the only way I’m able to get relief.
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We’re scheduled for once every 6 months which has worked well. On the few occasions I needed to contact him he has very responsive.
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I go every 3 months. If I have questions between appts I can always message my PA or MD through Hartford Healthcare’s patient portal. They respond very promptly. I am lucky to have a great team of doctors.
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My son sees his neurologist about once a year at Hartford Health Care in CT. We’ll be taking him to the Mayo Clinic as soon as I can figure out the details. I feel like these docs don’t care.
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Every three to six months. My neurologist is great and very patient. It took us almost a year to find the right medication that worked and that I was not allergic to.
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Every four months I see a neurologist. I live in a skilled nursing facility so I have constant access to nurses if I have health questions. I’m curious how many people reading this are in a facility?
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The neurologist tells my husband to make an appt in a year. His naturopath sees him every 3-6 months depending on how he is doing and which supplement he is taking. She has been very helpful. We feel very comfortable asking her questions. She has been proactive with keeping my husbands symptoms under control, giving me books to read so I understand what is going on and doing acupuncture which has completely managed his rigidity at this point. She has been able to keep him off of meds. We are keeping in contact with the neurologist for when he needs medical treatment.
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Update
I made an appt with a movement disorder neurologist who he saw a month ago. She said he was doing amazingly well for having been diagnosed 3 years ago. Tins hae slipped since then due to a herniated disc limiting exercise and a 3 week car trip. She does want to see him in 6 months. She is much more invested in his care than the reg neurologist.
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The last time I saw my neurologist, he didn’t want to see me for a year, but he’s always available for questions via messaging. He feels like I am doing very well and very little progression.
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I feel lucky if I can get an appointment every 15 to 18 months. However I can see a NP in 1 to 3 months or go to the ER if an emergency.
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My husband last spoke to his Neurologist (telephone consultation) 13 months ago. He’s deteriorated physically and I’ve had to push for a face-to-face appointment which is still 6 weeks away! We know they’re very busy but that doesn’t help when you’re watching your husband of 59 years changing, becoming more and more frustrated and anxious. Our GP has been as helpful as he can.
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I go ever 6 months. live about 2 miles from Doctor.
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My neurologist is 450 miles away at the University of Michigan. I see him every six months. Before COVID, both semi-annual visits were in person, but during COVID they changed to tele-visits. These virtual appointments actually worked quite well, so, post-COVID, we decided that from then on we would do one in-person visit and one tele-visit. I’m happy with this arrangement. I should also note that my neurologist has a very good relationship with my primary-care physician and they coordinate very well. I believe that I am receiving excellent medical care.
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Good discussion. I’m fortunate to receive care through a Center of Excellence at the University of CA San Diego Health, which is close to where I live, and see my movement disorder neuro every 7 months or so. It’s worked out well, especially when she tells me towards the end of our appts that I’m doing really well and that progression remains mostly flat. Of course, I am dealing with some symptoms but they’re mostly manageable. After 10 years since tremor symptoms appeared on one side I’m stoked to feel good most of the time and to be able to live a full and happy life. I’m also extremely grateful for some of the best care available.
Like Bruce, I’m super motivated to stay as active as possible and for as long as possible. My PCP sometimes reminds me of my age (73)and tells me to try to be a gentle athlete! Is there such a thing?! Well, I am an aging athlete for sure. Bruce, I took a look at your short bio and felt like some of your words were taken out of my mouth. Likewise, I feel very grateful for what I can still do–especially mountain biking, although I don’t bomb down the hills anymore like I used to. Doesn’t matter. Just to be able to get out and breathe some fresh air en route to the ocean and biking through a coastal canyon en route is about as good as I could ask for. Yes, every day, every outing, is a gift and a blessing indeed.
I’ve been active my whole life and exercise almost as much now after diagnosis as I did pre-diagnosis. I’m more than convinced that doing so pays dividends, especially in slowing disease progression. Exercise is medicine.
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Not that much. From time to time. And always he prescribe me some pills. So yeah. I like to see him.
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Every 8 months it’s a long wait but worth it he’s very thorough.
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Once again, what a great question, Mary Beth. You’re precious! I can see this one racking up the replies, TBS.
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I live in Venezuela but I come to Miami to see my neurologist every six months I am 2.45 minutes flight from Caracas, I think it is the ideal time to come back & see your doctor again, because we always have questions.
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In my 12 year sprint with this disease I am on my third neurologist. Each has seen me every three to four months. Each has been an excellent doctor, though the first one was a bit of a curmudgeon. He retired, #2 went to work for a drug company, and #3 completed her fellowship under #1 and #1 a couple of years ago.
I call when I have a problem, so there is contact between appointments; usually to straighten out problems getting meds from the pharmacy and once in a while for a med adjustment.
The clinic I use is excellent. If you live near Phoenix AZ, you can’t do better than Barrows.
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I’m supposed to see my Neurologist every 3 months but his schedule is so backed up that it ends up being 5 months before I can get the next appointment. I guess it’s that way everywhere. I wish we could move past COVID and what it did to our world. For questions in between visits, there is always the Patient Portal through which I can discuss minor but significant changes and other questions I might have with my doctor and/or nurse.
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The frequency of doctor visits depends on how I’m dealing with my PD symptoms. If I’m having new issues or issues ae worsening, may see doctor every 3 months plus follow-up by phone if needed. If balance or other significant issues arise, frequency of visits may even be shorter. If things are not progressing significantly, visits are normally every 6 months.
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Once in 4 months
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I don’t see my neurologist often, but my uncle, whom I’m an official guardian for, has frequent visits due to a brain injury from a fall. If you’re dealing with similar issues, you might find legal options helpful: https://www.bergellaw.com/legal-options-for-people-with-brain-injuries-in-toronto/. Regular check-ups are crucial for managing his condition and ensuring proper care.
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