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My Neuro Appt in Strangeville

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    My Neuro Appt in Strangeville

    I had to share this with you guys as only you could understand.

    I have recently moved to a new state and am in the processs of setting up my new medical team. First visit with PCP went great, I really like her and she seems very thourough. So, against my better judgement, I agreed to see the staff neurologist as she reccomended rather than an MS specialist. Lessoned learned.....

    After the normal initial completing of paperwork, talking with the nurse, handing over films and records, then waiting awhile, in pops a head, quickly stating I'm Dr. X, what diagnosis do you carry. To which I replied (even though this was firmly established prior) I am not currently diagnosed. Away goes the head.

    Ten minutes or so later, in comes Dr. X, appearing a little scatter brained. Oh well, smart people sometimes have quarky social skills, no big deal. She leaves the room several times, in and out, just gets up and goes, once swearing under her breath as she forgot something.
    So after a few very general questions about family history, she starts hounding me about how many pregnancies and miscarraiges I've had (I've had neither). Then agains asks about the same regarding my mother and then my aunts.
    Finally she gets to a little bit od neuro stuff, asking a very generalized question about what's been going on with me. I barely responded when she started asking so is that when the tingling started, I never said anything about tinging in this part of the body we were discussing. I told her I was treated with steroids the last flare I had. She went on a bit of a rampage on how bad steroids are for long term use and that I shouldn't be on them for this. I told her that I was not on long term steroids, I was given a medrol pack for the flare. Oh, she says, as long as it's only one time a year. (I know this is probably not coming out as weird on paper as it was in person, but hold on, there's more)

    So then, she asks if I've had an LP, yes I have, ONLY one? she asks, really emphasizing the word ONE. I questioned this and she said when you are not diagnosed you need to have several LPs to figure out what's going on. Oh, I said, we'll see. At this point we are maybe into the appointment 5 minutes or so, never having really discussed any of my history with the exceptions of generallities.

    Next question...Have you seen a pshyciatrist? No I said. To which she responds all of your symptoms are anxiety related. I looked at her and smiled realizing this was going to be an interesting appointment.

    She then started the exam, focussing on my eyes first for which I have just finished seeing a Neuro-Opths in my last state, followed by the opth in this state, a retinal specialist and an eye movement specialist, diagnosing my issue with double vision, but not the smudge I see. She told me oh, you have a retina issue. No, I said, I saw a retina specialist and had a laser retina scan done, my retina is in perfect condition. My double vision is being caused by a nystagmus, no one can identify the cause of the blind spot. She didn't like being corrected. I want to see all of the records she says. I told her the drs I saw (Most of which are in her computer, just look it up) the rest I have already given to her. I said it's in the package I gave you.

    The after some other crazy stuff she has me stand (I'm in a paper gown by the way), in quick succession about 3 times she asks, do you have any peircings, tatoos or scars, not allowing me to answer, all the while pulling up my gown in several directions, touching, prodding, and then pulling down my panties from the back. This lasted maybe 10 seconds, to quick for me to really react to how uncomfortable that was.

    A few more rapid quick tests, as if she was competing to see how fast she could go through the neuro exam, she tells me I can get dressed now. I said ok and looked at her expecting her to leave the room so I could dress. She gave a really cold look and demanded get dressed now, never leaving her chair.

    Now I'm dressed, knowing this appointment was a huge waist of time. She says I think I know what's going on with you. Now I'm thinking, she's going to redeem herself, she may be a little gruff, but hey if it gets me answers, I'll take it.

    She said she was going to order some blood work, beleiving that maybe I have a latent virus that perks up every once in awhile and make my immune system go haywire. Ok, I'm thinking, wouldn't it be great if this is what's going on, you know I really don't want MS.

    Then, just as she finishes saying this, she looks at me and say you have somatization disorder and you are doing this to yourself. After calmly asking her questions specificlly relating to my symptoms (that we never really discussed), I got a big ole lecture on it. I gave up at this point and just let her hear herself talk, took her blood work order, then left the room.

    When I got home, I looked up the ICD codes and blood tests that she ordered. One of her ICD code is a narcartic drug use code...I don't take any opiates, narcartics, nothing but Lyrica and I'm on a small doseage at that. (I am on LDN and can't even take opiates if I wanted to). And one of the blood tests is to check for long term and current use of morphine, opiates, etc. I am not happy that now in my medical file it says I am a drug user. I know that once I take the test and it comes back negative it will prove I don't use drugs, however, this code will always be there and not everyone wll search for the test to see if it is true or not.

    She did however order some very pertinent tests, which I will gladly donate for, but I will never return to this doctor again. I just hope whatever she writes in her report, which I will get a copy of, will not reflect badly to my new PCP.

    #2
    Hmmm...well at least she got to hear herself talk...lol

    Man what a waste of a good education! All that time wasted on someone like that. Makes you wonder about all the ppl she treats daily and what happens them?!? How many ppl has she miss DX?

    But at least you can check her from you box of "DOCTORS NOT TO GO VISIT EVER AGAIN"
    DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus

    Comment


      #3
      strangeville

      Maybe the pertinent question is "has she ever seen a psychiatrist?"
      I have been diagnosed, undiagnosed, diagnosed again and recently left once again without a diagnosis. So, I can empathize with you. Like you, I am frustrated. I must say, though, that I was relieved to hear the last neuro tell me "it isn't a matter of whether something is wrong with you, it is properly diagnosing you. I know something is wrong with you." I can't imagine being told what you were. hang in there.

      Comment


        #4
        Well mookie I must applaude you for your patience. I would have stood and politely said I can see this is going nowhere very quickly so if you do not mind stepping out I will get dressed, gather my records and be on my way. Nothing personal you understand I just think it best if we not continue this any further. Thank you and Good bye.

        I had a neuro like that one time but non-professional side of him did not come out until probably the 3rd visit. And let's just say it ended very abruptly. Nobody should have to be subjected to that type of medical treatment. If you can call that "medical" treatment.

        Anyway good luck in putting together your new medical team. That alone can be stressful. Hopefully you can find a neuro you like as much as your new PCP.
        Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

        It's hard to beat a person that never gives up.
        Babe Ruth

        Comment


          #5
          It's pretty darn weird on paper too! That is one of the most bizarre exams I've ever heard of. I don't think I'd get the blood work done. I'd be finished with anything to do with that doc.

          I can only add that I'm tired of being looked at as a drug seeker.....

          Comment


            #6
            Just playing devil's advocate for a minute.
            Sometimes Neuro's can be a little odd but keep in mind they ARE usually at the more brilliant end of the doctor spectrum. They also have to deal with patients who have diseases a LOT worse than MS while also having to deal with patients who don't display the clinical symtoms while claiming they have a given disease.
            MS isn't like having a broken arm where things are apparent right from the start. We're very prone to suggestion and many of the physical tests my Dr. throws at me seem to come out of right field because she doesn't want me overthinking the test so I skew the results. Several Neuros in the past have done the same thing because, let's be honest, as humans we can talk ourselves into almost anything.

            Comment


              #7
              I also applaud your patience. I would have lost my mind on the doctor. That is a very bizarre appointment. I don't know that I would do the bloodwork either. Good luck.
              Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
              ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

              Comment


                #8
                Weird huh? The more I replay the appt the more little strange things I remember. Luckily my husband was with me so I know I'm not imagining theese oddities. We now have a running joke in the house. Whenever anything strange happens, we blame it on my "anxiety"! My husband thinks it's funny because I'm anything but an anxious person. Yeah, granted I have moments, like anyone, but I'm pretty even keel and usually am the reasoner of the household.

                I will have the bloodwork done for a few reasons. First, she actually is having some important tests done that I don;t think I've had before. She is also checking deeper into my Vitamin D levels, because according to her, they are low. Who knows, maybe my anxiety is causing this too! Also I don't want any backlash for not taking my "drug test". I'd rather prove her wrong and move on. I don't need to return to her for my test results as they will be given to my PCP. I'll just go there for the results.

                As far as playing devil's advocate, I completely agree about smart people being a little odd. I granted her this from the get go. However, telling someone they have an anxiety disorder, especially one like somatization disorder after only spending a short amount of time and not even really discussing the issues at hand is totally irresponsible.

                Comment


                  #9
                  Yep, Strangeville indeed!

                  I worried I'd get a neuro like that !!! I've seen 4 so far and they've been mostly normal.

                  Neuro's are often regarded as kind of odd. They have to be extremely bright to deal with their type of specialty and sometimes very bright people are also odd.

                  It's as though they just can't relate and they often have a poor or latent sense of humor.

                  My first neuro was charming and funny. However, he whipped out my MRI and looked at it quickly and said 'oh, you're not bad at all'. (At the time I wasn't!) Then he showed me the Avonex literature (it was the best option at that time) and gave me a video to look at when I was home to help decide if that's what I wanted.

                  I actually liked him and he had good credentials. This was at a time when I was looking for any excuse to ignore MS and since I had no symptoms then I dismissed the dx. I remember looking around the reception area and seeing all these disabled people that I was sure was 'not me'. Ha! Live and Learn....

                  I hope you find someone you like. It's such a difficult thing since there are not a lot of neuros and the current climate is not a good one for anyone seeking to go through the rigorous curriculum to become a neuro.

                  As I mentioned; I've had four. I've moved four times in my last 16 yrs during which I've been dx'd with MS.

                  The one I have now is the only one I've had an opportunity to work with for any length of time.

                  Is there an MS clinic near you where you could find a better (hopefully) doc. Particularly look to hospitals which often have clinics affiliated with various specialties connected to them.

                  I've had the type of docs (not neuros so far) that have poor bedside manner so I know they exist unfortunately.

                  The one you saw sounded to me like they were testing some of their own meds!!!

                  Find another one.

                  Diane
                  You cannot dream yourself into a character; you must hammer and forge yourself one.

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