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    My neuro seemed to think I was someone else??

    Had my follow-up with an MS specialist today. Last appointment (6 weeks or so ago), she looked at my MRI with me and said my neuro and cog issues were either from CNS lupus or early MS. We agreed I'd get an EEG, since I seem to be having seizure-like episodes, as well as a neuropsych evaluation, since it's apparently a good way to determine if the cognitive issues are due to CNS lupus.

    So, today was my follow up. She obviously didn't read my chart, she decided before she walked in the room that ALL of my symptoms are from epilepsy (????) and sleep dep! Apparently the epileptologist last week gave the impression I have a lot of anxiety AND seems to think I have epilepsy. Then she said I probably have steroid-induced muscle weakness, which my rheumatologist has said is basically is impossible at the dose I'm on (10-15 mg/day, for maybe the past 2-3 months). She didn't understand why I haven't had neuropsych testing (her office has screwed up, I've called 3 times on it) and basically said, 'there's no way I can predict if you'll get MS or not'. I pointed out SHE saw 3 or 4 lesions on my last MRI and said it might be early MS, she was very confused. Then she said, "I don't have enough evidence to write you out". She said that several times and finally I said, 'wait, write me out of what?" she said 'your work'. Lady, I don't HAVE A JOB.

    Then she asked if I'd had labs, which they had in the computer- she went, 'oh, you have labs proving you have active lupus!' no @#$% sherlock. She had forgotten I have lupus. So then she said maybe it's CNS lupus and I was like, yeah, you said that last time, remember? I don't CARE what I have, I just need some help, I can barely take care of my kids. She said, 'well, ask someone to help.' wow, that was helpful . Ugh. So then she said maybe I have muscle weakness from being so much more active recently, taking care of my kids. I said, 'except NOTHING about that has changed in 14 months, yet I'm suddenly severely weak.' I had just told her about walking to the end of the block with my 2 year old, then having my entire leg go dead a few hours later, a symptom that lasted about 36 hours.

    So now I have to get the neuropsych testing, then she wants EMG testing to see if I have muscle degeneration. Which I've had, years ago, and it was the most painful thing I've ever been through. I pray it was the inexperience of the tester last time. I have a 3 day EEG coming up later in november, too. I asked repeatedly if there was some kind of symptom relief for the cognitive issues and the weakness, she kept saying, 'I can't treat you until I know what's wrong'. UGH. Fine. I'm willing to give her one more chance, since it's possible she had a bad day and/or confused me with another patient- she was great last time.

    I think one of two things happened- either she read the epileptologist's report and didn't remember anything from her previous appointment with me, or she literally looked at someone else's chart before walking in.

    She got testy when I said I don't really care about a definitive diagnosis, I just want to be able to function and care for my children- she said, 'well, you have two neurologists following you, what more do you want?'
    Rachel

    39 with systemic lupus, celiac disease, and possible MS

    #2
    Rsb I am so Sorry that you had to go through that. My Neurological did that to me the first two visits... 1 time is was MS and the second he was like well this could be but I didn't see any lesions.... I laughed and said " you have all my MRI's and they all have lesions on them, plus the 2 big times I'm lost all feeling on the left side... 6 wks of pt..." he turned red, looked into my chart and made a huge turn around... I ask him " do you need time to read my chart".

    Nope didn't make him a happy camper but he did remember me after that. I know they have tons of people to see all the time but My health ( as well as everyone else's) is Very IMPORTANT.

    I wish you luck in future appts. If you aren't happy with her change Neuro. Doctors.

    Hugs
    Dx MS Aug 2010 (after 2 years of searching)
    Started Copaxone Aug. 2010

    Comment


      #3
      [/QUOTE]
      She got testy when I said I don't really care about a definitive diagnosis, I just want to be able to function and care for my children- she said, 'well, you have two neurologists following you, what more do you want?' [/QUOTE]

      I'm very new here, but I would RUN, not walk to a new neuro. IMHO, there is no excuse for this type of treatment from any MD, in any field!!

      I'm sorry you had this experience and truly hope you get the help you need. I can't even imagine having to take care of small children with this... ((((HUGS TO YOU))))
      Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
      Ampyra 10mg 2xday
      Copaxone 1/20/12

      Comment


        #4
        Well that's unsetteling, when your doc confuses you with someone else. Then gets testy with you because of it!

        I'd be ticked off with her, outraged even. But I've had something similar happen. As difficult as it is to find a good MS doc, it may be in your interest to chalk ths one up to doc having a bad day at the office. See how it goes next OV.

        Good luck, nothing worse than having to find a new doc mid dx. Well actually there is something worse, it wouldn't be a good thing for you.

        Comment


          #5
          Hi Rachel:
          How horrible! Your neuro may have been great last time, but this time you got to see how she is when she isn't so great. I think we all have seen our doctors on their bad days, but the good docs don't seem to be that bad even on bad days.

          Your neuro is going to document her encounter with you in your medical record, so it's best that you also get your version into your medical record.

          I recommend that you write a letter (don't call or email) that says you believe she had you confused with another patient at the appointment on [put in date]. List all of the the things she said that you believe were mistaken, explain why you think so and give your version. With all you have to cover, it's important that you be as complete yet brief and clear as possible. Remember, the purpose of the letter is to get your points into your medical record, so anything you do in writing has to be coherent and businesslike.

          At the end of the letter, request that they put your letter into your medical record. If you want a reply, request that, too. Keep a copy for yourself, then send the letter by registered mail so you get confirmation of delivery.

          At some point you'll have to deal with this with the neuro. Whether you wait to do that until your next appointment or want to do it sooner is up to you. In the meantime, it's a good idea to get copies of any of your medical records you don't already have and keep collecting them as you go along. It might not be a bad idea to take your records with you to your next neuro appointment, so you have everything in front of you to refer to if something doesn't make sense. What a bummer!

          Comment


            #6
            So sorry you had this experience. It can be so frustrating to meet up with this apathy when we desperately need some informed answers. Hope the next visit goes better.

            There are two different needles used for EMG. I've had both. One has very long needles that are painful (I call them knitting needles) and the other are short thin needles, which my current neuro uses. He says they are just as effective.

            I would have been tempted to 'call her' on the things that bothered me. Maybe she needs a kindly nudge to pay more attention.

            Comment


              #7
              Re getting patients mixed up: an 82 year old woman in hospital for diabetes complications died last month in Australia after she was given chemotherapy drugs meant for another patient, who was a) a man, b) 46 and c) not even in the same wing of the hospital. Their names were not even remotely alike.
              When her family did their collective nut, they were told, "well, you should have been keeping a better eye on her".
              The charts at the end of her bed mysteriously disappeared.

              Comment


                #8
                Originally posted by Thinkimjob View Post
                Re getting patients mixed up: an 82 year old woman in hospital for diabetes complications died last month in Australia after she was given chemotherapy drugs meant for another patient, who was a) a man, b) 46 and c) not even in the same wing of the hospital. Their names were not even remotely alike.
                When her family did their collective nut, they were told, "well, you should have been keeping a better eye on her".
                The charts at the end of her bed mysteriously disappeared.
                OMGOSH!!! WOW. That is actually VERY scarey!!!

                RE, I agree with everyone else RUN don't walk to a new neuro. I've been very fortunate my docs are in a wonderful but smaller hospital/clinic and they are absolutely FABULOUS. They know who I am and even ask about my home life (kids, hubby). But I've had clashes with the big-time docs and I would choose my docs over them ANYDAY of the week. Good luck and I'm sorry that happened to you.
                Love, Laugh, Live...in this order
                Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

                Comment


                  #9
                  Thanks for everyone's responses. I walked out of there, went to buy my son a pair of boots, then sat in my car and sobbed.

                  I told my husband about it this morning (he's overseas), and he called the medical group where this occurred to find out how to make a formal complaint. A representative is supposed to contact me directly and I'll have the opportunity to document (thanks, redwings!) the errors she made, and request the letter be placed in my chart.

                  I was SO annoyed with that epileptologist last week who said he thought I was having anxiety attacks- I knew once the word "anxiety" got put in my records, it would be THE FIRST WORD people see. Do I experience anxiety? Of course! I'm in a pretty stressful situation. I feel anxious about my future, especially since my lupus symptoms got so bad, so fast, and I'm flying solo here. But anxiety attacks, by definition, involve feeling fear or anxiety. THAT ISN'T HAPPENING during these episodes.
                  Rachel

                  39 with systemic lupus, celiac disease, and possible MS

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