How often to see Neuro Doc??

    • Anonymous
      February 16, 2008 at 8:38 pm

      hello pals,
      i’m curious as to how often most of you guys go to see your neurologist??
      my dx was 3/06. So, still just a little under two years now. The first year i would see my neuro about every 3 months.
      due to some “god” out there, my metro community already has too many neuros.
      however, on my last appt. 10/07 i was told there were no appointments left on the book…. i was sort of like wtf?? then called a few weeks later to schedule another appt. and i was given a date in JULY of this year (thank goodness). oh my, i won’t even start in on his office staff.. GRRR!
      my neuro had been pretty good about trouble shooting me via the phone during non-appt. times.
      ok, so.. anyhow, how often do you guys go in pyhsically to see your neuro??
      don’t think i’m neglecting myself, i see my PCP at least bi-monthly.

    • Anonymous
      February 16, 2008 at 10:27 pm

      Hey There Flower,

      Love the name. I was dx GBS Sept 2006. As far as the neuro goes I haven’t seen mine for about a year now and my reg. GGGGGrrrrrr dr. said to me on my last visit 10 Jan 2008 “I would see your neuro for that”. Ask him another question and he says “I would see your eye dr. for that”. Well he don’t know it yet but I am going to take his “dr. orders” and find a dr that knows about GBS or start taking my own advice. What good is a Internal med. dr. anyways? Nice to hear your dr takes phone calls. Sounds like a keeper. “oh my, i won’t even start in on his office staff.. GRRR! ” Sounds like the one here.
      Maybe someone else has better info. Sorry I just had to rattle on.
      Good luck !

      “Share a Smile”

    • Anonymous
      February 16, 2008 at 11:13 pm

      I see my neuro every six months now (it’s been about 5/6 years since my first attack) and have a nerve conduction velocity test/study every year, as I am told, my is CIDP is slowly progressive. If I’m having a problem in between my visits to my Neuro, I go to my local doctor.
      Best wishes,

    • Anonymous
      February 17, 2008 at 9:57 am

      When Emily was first dx’d she saw her neuro once a week. Now we see him every 8 weeks.


    • Anonymous
      February 17, 2008 at 10:27 am

      Now that I am on a maintenance dose of IVIG, I see the neuro every four months. Seems to be about right.

    • Anonymous
      February 17, 2008 at 12:02 pm

      Every six months for refills etc.

    • Anonymous
      February 17, 2008 at 5:16 pm

      I see my Neuro about every 4 to 6 months depending on the circumstances. I called her after she told me I was getting more IVIG treatment but I hadn’t had a date yet from the hospital so I left a message with her secretary at the hospital and 2 days later she called me personally on the phone at 6pm to find out what I wanted. It was suppose to be a year between appointments but last summer I was having lots of trouble and my Family DR’s note for work was not acceptable so I had to get her to fill another one out. That is when she ordered my first 5 days of IVIG. Just got my 2nd 5 days in January.
      I think some DRs feel that if you are not getting worse they can hold off but once you are having problems then an appointment can be made within a month.


    • Anonymous
      February 17, 2008 at 9:37 pm

      I saw my Neuro once…when he did all the electricution tests.

      Haven’t seen him since, my family doc looks after everything and neuro said there was no point in seeing him unless things changed!

      Neuro has given family doc power to order all my IVIG and any other tests I need.

      I guess I’ll keep it this way unless needed
      (Neuro is a 19 hour greyhound trip each way ):eek:

      Rhonda from Canada

    • Anonymous
      February 17, 2008 at 9:59 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]See my Neuro once a month.
      PCP, bless him, knows GBS/CIDP and if he doesn’t have an answer, finds one and tells me.
      I am so lucky[/SIZE][/FONT]

    • Anonymous
      February 17, 2008 at 11:27 pm

      [COLOR=black]I see my neurologist every 4 to 6 weeks, and have since my diagnosis 2.5 years ago. It seems right, as we are still fine-tuning the treatment. I have a combined therapy of prednisone, azothioprine, and plasmapheresis, so getting it dialed in is time consuming.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]If something comes up between appointments, he is very happy to communicate by e-mail or phone. He even gave me his pager number and office phone number in case of emergency or something seriously messed up (orders for plasmapheresis not being received being the main one). Who could not like a doctor like that?[/COLOR][COLOR=black][/COLOR]
      [COLOR=black] [/COLOR]
      [SIZE=3][FONT=Times New Roman] [/FONT][/SIZE]

    • Anonymous
      February 18, 2008 at 2:43 am

      I have tried to see my neuro but his office staff said since I’m an established patient I can only see the P.A.’s. I saw the P.A.s and was disappointed. The P.A.s aren’t doctors and since my IVIG is over $ 50,000 a month I want to see a medical physician. When I was having IVIG at his clinic I could see every week almost.

      Now I’m having IVIG at home and at a lost to get to see HIM in one year.
      One the home health nurses said he wanted to see him so I told her what had been going on. She has promised if I come to the IVIG clinic location she’ll make sure I see him. I have found out he really has no idea of how incompetent his staff is…. That’s sad as he’s so good.Wish me luck as I am planning on attempting to see him next month.

      Good idea to see about having the nerve conduction test redone-been 3 years.

    • February 18, 2008 at 7:12 am

      I’m scheduled in every three months, if I have a problem either he calls me or they squeeze me in. After talking to the nurses at the infusion lab I’m lucky. There isn’t enough neuros in Spokane {we have a very high MS rate up here}, they say the one I see is not only one of the best for CIDP here but he has one of the best records for returning calls , seeing patients, etc. Plus I really like him, he talks to you like a person and doesn’t make you feel like you’re being rushed through.