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Neuros and MS Specialists -- A few Questions

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    Neuros and MS Specialists -- A few Questions

    Just wondering. I've read a lot of posts lately, it seems, about Neuros vs MS Specialists, and, also, sometimes, about dissatisfaction with your doc.

    1. Do you see a neuro or an MS Specialist?
    2. Is your current doc your first MS doc? Or, have you made a switch, and, if so, why?
    3. On a scale of 1 to 5, with 1 being the lowest and 5 being the highest, how satisfied are you with your current doc?
    ~ 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.

    #2
    I am seeing a regular neurologist who diagnosed me. On a scale of 1-5, I would give him a 4. The only reason that I would not give hime a five, is that he is annoyed that I am not taking a dmd and it kinda shows in his attitude.

    I get it that he and others think that I should be, but the side effects are hard to deal with and I need time to figure out what I think is best for me. I truly have taken in everything that he has said and when I am ready will try again.

    He doesn't agree and it shows, kinda whatever happens don't complain to me attitude. I'm sure it took him a good portion of his career to formulate his position, I'm only asking for time to formulate mine.

    He did get me symptom relief after, but in a more detached way. Otherwise, he is extremely professional and I would recommend him.

    Comment


      #3
      I am being treated by an MS specialist. He is a neurologist that 'specializes in the treatment of MS. I would grade him with a 4.5+. I saw about 3 other general neurologists and I got a second opinion from one of the most prominent MS specialists in the Delaware Valley area. I spent about 5 years trying to identify a specialist in my local area. I didn't want to see a MS doctor that was 20+ miles away from my house.
      The reason I switched neurologists is because I felt that I needed to find a 'specialist' and I felt that my former doctors made me feel as if they were treating my MS by reading instructions out of a manual. I know, without question, that my current neurologist is on top of the MS field.

      Comment


        #4
        Find the doctor that is right for YOU!

        I was originally diagnosed by a general neuro, whom I stayed with until his retirement over a year ago. Four months after dx, I found a MS specialist at the closest teaching hospital. Stayed with him until this past December.

        I had a rare side effect from tecifidera (heart palpitations and shortness of breath) which landed me in the ER. Went to a specialist who suggested putting me on Copaxone but he "didn't think it would have any effect or do me any good". He also didn't believe in alternative treatments such as acupuncture, physical therapy or dietary changes. So, I decided to search for a new doctor who thought the same way I did.

        Ended up at IMSMP, which is part of Tisch, and I love it! My doctor believes in alternative methods and aggressive approaches to fighting back. He personally called my GP and explained the treatment I will be taking as well as the alternative treatments we discussed. My former specialist would not even send my GP his notes or my test results.

        I have been unmedicated for four months and will begin tysabri on 3/30. Finding the right doc makes all the difference in the world. My new doc has given me hope and light back into my life. He makes me feel like an actual person, not a statistic.
        Dx'ed 3/12
        Avonex 4/12, Tec 11/14-12/14, Ty 3/15

        Comment


          #5
          I've consulted with Neuros who in hindsight must have gotten their MS training from something equivalent to Neuros-R-US, including the 5 minuet clinical exam versus the one hour plus exam one would expect from any reputable MS specialist.

          My MS neuro specialized in MS for possibly +30yrs before the MS Specialist Certification Standards were adopted. He participated in the clinical trials for the first generation of DMDs.

          I would rate his MS expertise 10+, but based on his misogyny, he loses at least half, if not more of those points based on my rating scale.

          Comment


            #6
            I see the neuro who Diagnosed me. He is also my dads Dr. I THINK he is an MS specialist. I give HIM a 5 BUT I never get to see him. I've been going there for a year and I've seen him 2 times the initial visit and the visit after when we talked about meds and stuff. After that I've seen his PA everytime I give her a 2 maybe even a 1. I'm in the process of deciding if I should switch... I'm REALLY torn about it.
            Sos219
            4/24/2014
            Avonex

            Gilenya 1/29/2015- present

            Comment


              #7
              Thanks for your responses. Here are my answers:

              1. Do you see a neuro or an MS Specialist?
              I see an MS Specialist.
              2. Is your current doc your first MS doc? Or, have you made a switch, and, if so, why?
              I started with a general neurologist; the closest one is about 30 miles away. I really liked him. He was personable; he returned each and every phone call personally, often in an hour or less. However, my MS was fairly a-typical and not very controlled, and, with his blessing, after five years, I began to see an MS Specialist, even though I need to drive three hours each way to see her.
              3. On a scale of 1 to 5, with 1 being the lowest and 5 being the highest, how satisfied are you with your current doc?
              On a scale of 1 to 10, I'd have given my general neurologist a 5 for likability, but, only a 3 for effectiveness. I'd give my MS specialist a 5 for both. I'm glad I made the switch.
              ~ 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


                #8
                1. Do you see a neuro or an MS Specialist?
                - MS Specialist.
                2. Is your current doc your first MS doc? Or, have you made a switch, and, if so, why?
                - I started with my GP when I was having issues but when it was looking like MS he sent me to a MS Specialist and I have not switched.
                3. On a scale of 1 to 5, with 1 being the lowest and 5 being the highest, how satisfied are you with your current doc?
                - 4.5 only because his bedside manner can be lacking at times.
                Since the last post "morphed" it to a scale of 1 to 10 I'd give him a 9 !

                Comment


                  #9
                  1. Do you see a neuro or an MS Specialist?

                  Neurologist --- His professor wrote one of the first books about MS.

                  2. Is your current doc your first MS doc? Or, have you made a switch, and, if so, why?

                  Yes and the one that diagnosed me. I did switch once to a Neurologist that was closer (saw him 3 times before going back to my original Neurologist)

                  3. On a scale of 1 to 5, with 1 being the lowest and 5 being the highest, how satisfied are you with your current doc?

                  I have always been very satisfied with him --- 5
                  Diagnosed 1984
                  “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                  Comment


                    #10
                    Answers

                    1. Do you see a neuro or an MS Specialist?
                    - Neuro
                    2. Is your current doc your first MS doc? Or, have you made a switch, and, if so, why?
                    - I just got diagnosed so I'm seeing the Neuro who diagnosed me. That said, I made an appointment with the top MS doctor in the Chicago area, Dusan Stefoski, at Rush University Med Center. I can't get in until the end of June to see him, so I'm staying with my Neuro in the mean time and beginning treatment.
                    3. On a scale of 1 to 5, with 1 being the lowest and 5 being the highest, how satisfied are you with your current doc?
                    - I feel bad rating him because he's very nice...but he has answered a few of my questions with "I checked with my colleague and... " Like, I want a doctor who KNOWS and doesn't have to check with his colleagues for answers! Based on that I'd rate him a 2.
                    "It matters not how strait the gate,
                    How charged with punishments the scroll,
                    I am the master of my fate,
                    I am the captain of my soul." ˜William Ernest Henley

                    Comment


                      #11
                      1. Do you see a neuro or an MS Specialist?
                      MS specialist.

                      2. Is your current doc your first MS doc? Or, have you made a switch, and, if so, why?
                      Soon after my 1st sx (paresthesia in feet), my physiatrist sent me to a general neuro. In a couple more months the neuro dxed MS, so I went to the Stanford MS clinic for a 2nd opinion. He said no (basically called it CIS), so I kept seeing my 1st neuro until the next MRI, which showed new lesions.
                      It took me a while to get back in to Stanford for a 2nd 2nd opinion (they have a policy of getting you in quickly for the 1st 2nd opinion ), but their #2 guy agreed this time.
                      I decided to stick with Stanford because (a) I had a good rapport with Dr. Dunn and (b) Stanford has a lot of scans of my brain from a tumor & recovery a dozen years before.
                      Dr. Dunn sees me every 6 months, and the one time I had an 'unscheduled event' I saw the NP in a day or two.

                      3. On a scale of 1 to 5, with 1 being the lowest and 5 being the highest, how satisfied are you with your current doc?
                      4.5 -- Stanford is busy & Dunn is easy to talk to, so appointments can start quite late, but he never fails to give me as much time as I need...
                      1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
                      NOT ALL SX ARE MS!

                      Comment


                        #12
                        1. I see a neurologist at an independent neurology institute that treats a wide variety of disorders but specializes in MS, sleep disorders, and Parkinson's Disease. My doctor is a neurologist, but his nurse is a Multiple Sclerosis Certified Nurse.

                        2. In 2006 my GP ordered an MRI due to atypical Bell's Palsy. He told me it looked like MS and sent me to a neurologist. That guy performed a spinal tap which came back positive for MS, and he said he was 99% sure I had MS but wanted me to see an MS specialist to be sure. So I saw one who said she wasn't sure. Three years, six MRIs, one CIS, and many symptoms later she said, Ok, you have MS. Hubby didn't want to hear that, haha, and said to wait 6 more months and have another MRI. I said no way I'm waiting any longer. I'll just get a second opinion now. So I went to an MS center (part of the aforementioned neurology institute) two weeks later. The neurologist took my history, evaluated me, looked at all my previous test results, and said MS for sure, no doubt. I stayed with this neurologist because I liked the feel of a group of doctors and nurses in a specialized center rather than one doctor and one nurse in a large hospital. Also my wait time went from about an hour to about 15 minutes. This institute also has a research center, and after reviewing all the available FDA approved drugs and other options I joined a drug trial for a pill similar to Gilenya. I've been on the drug since June of 2010.

                        3. My neurologist gets a 4.5. Most of a usual visit is spent with the MS nurse who is great and also gets a 4.5. The research staff mostly get 5s, and because I'm in the drug study I actually have the cell phone numbers of the main research nurse and the neurologist. I've only called my neuro's personal cell once in five years, but I can't tell you how comforting it is to know that I can.
                        Portia

                        Comment


                          #13
                          I was first DX'ed by a neurologist in 1986. Took 2 years of testing before he said it was MS. I took my MRI to another doctor for a 2nd opinion. He agreed it was MS. Stayed with first doctor, had a treatment called ACTH-was in hospital for 5 days having an IV every morning that left me with "moon face" . Did take the tingling in my legs away. then my employer changed my health insurance and I needed to find new one. That was 2003, She got me started on Betaserson shots. 2003 another insurance change and I was able to go to the neurologist who gave me the 2nd opinion. He now has a clinic-specialist MS. He did another MRI and changed my treatment to Copaxone. I give him a +10 See him on a regular basic. Am now changing to Tysabri.

                          Toot
                          toot

                          DX 1986 currently on TY
                          Copaxone 2003 to February 2015

                          Comment


                            #14
                            1 MS Spec.

                            2 I started with a Nero. After 21 years have switched to a MS Spec. I switched because I didn't think I was benefiting the last few years. I think he was getting ready to retire. The MS Spec Works out of the U of M and spends time asking and answering questions.

                            3 The Nero I would rate a 3 based mostly on the first 16 years. The MS Spec rate a 4.5 I wish I would of switch earlier.

                            Comment


                              #15
                              Wow. Thanks for all the replies. It's good to hear your stories.
                              ~ 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

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