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All about your Neurologist and you - September Member Topic of the Month

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    All about your Neurologist and you - September Member Topic of the Month

    Your Member Topic for September is here!
    You made suggestions and we listened!


    Thanks to all who participated in August's Member Topic of the Month! Hard to believe it's already September.

    For the month of September, your topic will be:

    "All about your Neurologist and You"

    *How to find a MS specialist
    *When to ask for a second opinion
    *When to call your neurologist
    *How to prepare for an appointment

    Please join us in this important conversation on how to find a MS Specialist, when to ask for a second opinion, when to call your neurologist, and how to prepare for your appointment. Your thoughts and concerns on this topic are always welcomed.

    Thank you all for your participation and stay tuned for more topics from your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here: http://www.msworld.org/forum/showthr...the-Month-quot
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    #2
    This is a great topic, and the listed discussion items are a good start. But they aren't ALL about your neurologist and you. I'd like to propose a few more topics that seem to be common trouble areas that come up in MS forums.

    *How to have realistic expectations about your neurologist
    *How to fulfill your part of the doctor-patient relationship
    *What to do during an appointment to get the most out of it

    That still isn't ALL about your neurologist and you. But those areas speak to the underlying issues that can affect the other areas mentioned, apply to all of us, and add to a broader and more balanced discussion.

    Comment


      #3
      1) How find an MS specialist, I sort of got lucky on this one. The numerologist I was seeing hired an MS specialist.
      2)When to ask for a second opinion, again, I got lucky, that is the first question she asked me, if I had got second opinion yet.
      3) When to call your numerologist, My doctor told me that I should first let my PCP know of any new issues and then to call her office and let them know. She said that more often than not my PCP would be handeling most of the issues that come up. She also said that in the event that things appeared to be neurological she would see me that same day.
      4) How to prepare for an appointment, I mostly write myself notes in my smart phone about new symptoms I notice, or I write questions about different things I wish to discuss. I have the memory of one of the stones in my driveway, so if I do not do this, it does not get mentioned.
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment


        #4
        Thank you, hunter ! This is very important info that all of us, MSer's need to hear and use !

        Comment


          #5
          The National Multiple Sclerosis Society has several resources covering how to relate to your doctor and get the most out of your medical visits, including:

          http://www.nationalmssociety.org/Res...th-Your-Doctor

          http://www.nationalmssociety.org/Tre...-Doctor-Visits

          http://www.nationalmssociety.org/Nat...reProvider.pdf

          ... and more. No one has to feel alone in trying to figure it all out by themselves.

          Comment


            #6
            Originally posted by hunterd View Post
            1) How find an MS specialist, I sort of got lucky on this one. The numerologist I was seeing hired an MS specialist.
            2)When to ask for a second opinion, again, I got lucky, that is the first question she asked me, if I had got second opinion yet.
            3) When to call your numerologist, My doctor told me that I should first let my PCP know of any new issues and then to call her office and let them know. She said that more often than not my PCP would be handeling most of the issues that come up. She also said that in the event that things appeared to be neurological she would see me that same day.
            4) How to prepare for an appointment, I mostly write myself notes in my smart phone about new symptoms I notice, or I write questions about different things I wish to discuss. I have the memory of one of the stones in my driveway, so if I do not do this, it does not get mentioned.
            Guess your Dragon software thinks you also see a numerologist. Lol.
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment


              #7
              1) my insurance changed so my neurologist is the MS specialist that I'm allowed to go to
              2) she has sent me to MGH specialists when she can't figure out the best way to handle specific symptoms (otoneurologist). Otherwise haven't needed second opinion
              3) if I have any neurological changes I just call her office directly. Don't have to go through my PCP. Don't call much, usually wait things out but if I have relapse or new symptoms I call. Two weeks ago started having seizures so called her right away
              4) I'm a nurse so I'm usually pretty prepared with medical questions and thoughts about treatment plans.

              Getting most out of it: make sure I have all questions ready, bring any paperwork needed with me, know where I'm at with prescriptions, know what changes/ symptoms are going on that concern me. What if any follow up I need.

              Comment


                #8
                Originally posted by Kimba22 View Post
                [CENTER] [B]Your Member Topic for September is here!


                *How to find a MS specialist
                *When to ask for a second opinion
                *When to call your neurologist
                *How to prepare for an appointment
                I found my neuro from this board, thanks to JerryD! Aside from referrals and MS clinics, you can check to see if neuro is part of Touch program, meaning they can prescribe Tysabri. It may not be a drug you choose, but at least tells you the neuro has full arsenal at their disposal. You can also look for neuros who have presented at MS seminars, educational forums, are active in MS organizations.

                I would ask for a second opinion on diagnosis or undiagnosis, or if symptoms worsening and want confirmation that current neuro is doing all that can be done.

                For when to call your neuro and how to prepare for appointment - these are conversations you should have with your neuro.

                On when to call, the standard new symptoms or worsening of old that last 24-48 hours is a good guide. I also call if prescribed a new Rx from another doc to make sure ok. I have been lucky, ad my neuros always call back timely and preferred that when I was not sure, to call.

                In preparing, I have a detail date log. From that, I create summary of neuro related changes (new, worsening, improving, disappearing), any non-MS medical issues, test, results, and current medication/supplement list. I then have my list of questions/topics, prioritized. My Rx list is a separate page, then the rest is on one page most times. I bring the detail log in the event he wants to see it or has questions. He then includes these docs in my medical record.

                Jreagan - they are great additions. I think all are conversations to have with your neuro: Expectations of patient/doctor relationship, and how neuro wants you to prepare for appointments. This understanding will go a long way in making sure you build trust and openness and understand how disagreements may be handled.

                If a neuro isn't willing to have this conversation, it is a red flag. As a patient, once you do have this dialog, it is important to listen and put the effort in. Your neuro will see this as showing respect for their knowledge, but also your willingness to do all you can and work in partnership with them. I know my old neuro said nothing frustrated him more than having a conversation with a patient, only to have the patient ignore or not follow thru on advice/ direction without a valid reason.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  New Neurologist

                  I've discussed this before, but maybe some folks will have some tips for me for my upcoming appt. I don't know if it's me, my attitude, or what. Background...I was diagnosed in 2005, started my once a week DMD in Jan. 2006. I've remained on the same DMD for 11 years. I don't think I've ever had a full blown exacerbation since my diagnosis, but I do have mobility problems with my right foot (foot drop). It has progressed, but I'm still able to just use a cane in the house.

                  I had the same Neuro (MS Specialist) for 10 years, and we had a great patient, doctor rapport, but he retired in 2014. The new Neuro is also an MS Specialist, but his disposition is the complete opposite of my first Neuro. Although my MRI results have remained the same since 2007, the new doc wants me to have an MRI once a year, with contrast, CBC, and that entails going to my PCP for bloodwork, etc. First doc only suggested a possible MRI maybe twice after I was diagnosed. New doc renews my prescriptions for 6 mos. at a time. Original doc wrote the script for 1 year, and only needed to see me once a year, and always said to call him in between if I was having a problem. I had a great rapport with my first doctor, but I'm having real problems communicating with this new doctor. Do I ask him why he only renews my med for 6 mos.??

                  My appointments thus far have been where he checks reflexes, weight, BP, eye movements, etc. just like my first neurologist, but afterwards you go into his other office, and as he looks at his computer, and asks questions, he types all my answers, still looking at the computer, never making eye contact with me, the patient. Then he asks me if I ever thought about switching my med to Plegridy to which I reply for the 4th time, that I'm not interested.

                  I realize that he can tell if I'm progressing by an MRI, but could it also be more rewarding to him financially, if he insists that I have an MRI once a year, and an appointment every 6 months?? Or, could it just be that I really liked my first doctor, and I just can't get used to this doctor? Or is this just how most doctors are today? I'm already anxious about my upcoming visit and I already have a bad attitude beforehand. Apologies for griping, but I'm a bit frustrated and thinking maybe I should be looking for a new doc. Thanks all.

                  Comment


                    #10
                    hope

                    Melody,

                    Sorry, I did not respond to your post until now. I hope that you have not had your appointment , yet. And, if you did, I hope it went okay.

                    What your new neuro is asking as far as an appointment is pretty standard of care with appointments and a chronic disease. That being said. It is not highly unusual for a neuro to do a once a year, either.

                    I am quite frank with my neuro, and he with me. If you only want to be seen once a year. Try and communicate that to your new neuro. Enable the help of his office staff to communicate this to him, if you have to.

                    My neuro allowed me to not have yearly MRI's, until, I started on Tecfidera. I, too, think this can be communicated to your neuro. Just speak honestly to him.

                    I would also tell him, to not offer the Plegrity to you anymore, if that is what you want. And, that you will tell him, if and when you want to change your med.

                    But, once again, I am pretty straight forward and honest with my neuro. And, he is with me.
                    God Bless and have a good day, Mary

                    Comment


                      #11
                      Mary,

                      Thanks so much for your response. I see my Neuro in Oct., and I'm going to be a bit more straightforward with the doctor. Great advice. Thanks again!

                      Comment


                        #12
                        Originally posted by Kimba22 View Post

                        "All about your Neurologist and You"

                        *How to find a MS specialist
                        *When to ask for a second opinion
                        *When to call your neurologist
                        *How to prepare for an appointment
                        *How to find an MS Specialist:
                        Request a referral from your PCP (primary care physician).

                        My answer also addresses when a neurologist isn't enough.

                        For the first five years, I went to a neurologist. I was referred to him by my PCP. I liked the neurologist, but was MS was not under control and my flares were more frequent and severe than they should have been, even with a DMD.

                        By this time, I had a different PCP and specifically requested a referral to an MS Specialist. It meant driving 3 hours, one way, to Kansas City. There was a waiting list, but I got in more quickly by being put on a cancellation list; I received one-day notice about the opening, but was able to make arrangements to go.

                        *When to call your neurologist
                        I call whenever I have symptoms of an MS flare. In my case, the flare is always treated with steroids, because, in my experience, if it isn't, it continues to worsen until I end up in the hospital. Many people might not require steroids, but even if treatment for a flare won't be needed, it's good for the neurologist to make note of your flares in your medical record.

                        This question, though, is a good one to ask your neurologist. He or she might have their own guidelines.

                        *How to prepare for an appointment
                        At the time of making the original appointment with my MS Specialist, I'd already had MS for five years. I had already signed the requested permission documents regarding my medical records, so the records were already at the office when I arrived for my first appointment.

                        That's probably not really what this question is asking. For a regular appointment, be ready to report symptoms, ask questions you've been wondering about, etc. Write these down before you go.
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #13
                          how long should yearly near appt be

                          Originally posted by Kimba22 View Post
                          Your Member Topic for September is here!
                          You made suggestions and we listened!


                          Thanks to all who participated in August's Member Topic of the Month! Hard to believe it's already September.

                          For the month of September, your topic will be:

                          "All about your Neurologist and You"

                          *How to find a MS specialist
                          *When to ask for a second opinion
                          *When to call your neurologist
                          *How to prepare for an appointment

                          Please join us in this important conversation on how to find a MS Specialist, when to ask for a second opinion, when to call your neurologist, and how to prepare for your appointment. Your thoughts and concerns on this topic are always welcomed.

                          Thank you all for your participation and stay tuned for more topics from your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here: http://www.msworld.org/forum/showthr...the-Month-quot
                          this is not your actual question but i am only getting a 20 minute appt (after the initial one) for my yearly appt which is not adequate and i wonder what others get. i have kaiser.

                          Comment


                            #14
                            Originally posted by melody60 View Post
                            ...

                            I realize that he can tell if I'm progressing by an MRI, but could it also be more rewarding to him financially, if he insists that I have an MRI once a year, and an appointment every 6 months?? Or, could it just be that I really liked my first doctor, and I just can't get used to this doctor? Or is this just how most doctors are today? I'm already anxious about my upcoming visit and I already have a bad attitude beforehand. Apologies for griping, but I'm a bit frustrated and thinking maybe I should be looking for a new doc. Thanks all.
                            My MS Specialist does a neurological exam, asks a few questions and gives whatever time I need to ask her my questions. She did one MRI when I began seeing her, because she had some questions about my dx and wanted to confirm it. Now, she does MRI's once every five years.

                            My first neurologist did 7 MRI's within the first two years, but it was prior to dx, and lots of flares and weird symptoms. He didn't do any subsequent MRI's during the remainder of the five years that I went to him.
                            ~ Faith
                            MSWorld Volunteer -- Moderator since JUN2012
                            (now a Mimibug)

                            Symptoms began in JAN02
                            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                            .

                            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                            Comment


                              #15
                              My MS specialist is part of an MS clinic at a teaching hospital. I can call her whenever I am having symptoms and email her with questions. I have never waited for more than a few hours for a response by phone or email. What I like best is that she makes her patients part of the treatment plan. She listens to any concerns and works with me to develop a treatment plan we are both happy with. We discuss treatment options, possible side affects of any meds and what treatment option would be best for the current issue. I know this is not the experience everyone has and I do realize how just how fortunate I am to have her!


                              *How to find a MS specialist*

                              Hospital in larger cities and teaching hospitals are good places to look for MS specialists and MS clinics. Your PCP may also be able to help with finding an MS specialist.

                              *When to ask for a second opinion*

                              I would get a 2nd opinion if I did not feel confident in my neuro's ability to diagnose or treat my disease or if I wasn't comfortable with how they came to the conclusion I had MS. Basically, follow your instincts. If you are uneasy with your diagnosis/treatment plan, seek out a 2nd opinion.

                              *When to call your neurologist*

                              When I asked my MS neuro this question, she said generally symptoms need to last for at least 24 hours, but I should call any time there are new symptoms so she can evaluate what to recommend (come in to see her, go to the ER, wait it out for a day or 2, etc). The few times I have had to call her, she has called me back within an hour or 2.

                              *How to prepare for an appointment*

                              I keep a journal of symptoms and summarize them for each appointment. We usually concentrate on any new or worsening symptoms if there are any. Being prepared makes the best use of the time allotted for your appointment.
                              RRMS: Diagnosed July 2013
                              Assistive Device: cane.
                              Meds: Copaxone, Ampyra, Vitamin D

                              Comment

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