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    The neuro lied

    So when I called the hospital neuro for results of my JCV antibody titer stratify, she told me it was positive. I asked for the number associated with the stratify (index) to see if I was high positive and she said, "it just says positive."

    So my DH picked up all my blood test results from the medical records and it says first results were indeterminate and the inhibition assay says negative.

    Why would the neuro tell a bold faced lie which upset me for days?

    She also caused me problems in the hospital with telling PT to get me up and walking with a walker when my good leg's ankle is broken and my other leg is very weak. The orthopedists specifically said no weight bearing on the cast.

    This caused me problems every day with PT which was emotionally upsetting causing me long crying spells. Then one of the nurses lied about something too as well as another doctor. What the hell?

    How can I ever trust this hospital again? Should I file a complaint? What on earth? This is despicable. Heaven help me. I think this is because the first time ER sent me home, unable to care for myself and my husband unable to care for me, my husband called their home health care and yelled at them that this was malpractice. But what we had been put through was unbelievable. So they gang up and take it out on me?
    ---------------
    "It's never crowded along the extra mile." --Dr. Wayne Dyer

    #2
    I can't comment on the Ty stuff since I've never dealt with it, but there's a reason you were ordered no weight bearing. If your ankle doesn't heal right, that's on them for deliberately disobeying orders.

    You sound like you're dealing with incompetent people. Any chance you can change neuros? That one clearly isn't looking out for your best interest.
    Diagnosed 1/4/13
    Avonex 1/25/13-11/14, Gilenya 1/22/15

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      #3
      I have been given wrong results from a doctor, because he failed to read the whole report (LP, it was about 25 pages long).

      So I know it can happen. However, it's possible that the neuro you spoke to take an extremely conservative approach to the titer results and considers the "equivocal" or "indeterminate" range to be positive. By which I mean that they don't want to take the risk.

      Having said that, it should still be your choice whether to take Tysabri or not, even if you are "Positive." You might ask to be given your titer, even if it means taking the test again.

      Comment


        #4
        I totally agree with Istri. You need to begin the search for another neurologist who is looking out for your best interests. The most important lesson I learned about my MS diagnosis (I had never had much experience with the medical community before this) was that I needed to be my own advocate. If I didn't look out for myself because no one else would.

        I have actually found that people who care, appreciate the fact that I am informed, won't take "bull" for an answer, and will say "NO!" if that's what I feel.

        Good luck!

        Comment


          #5
          I'd call your doctor right away and ask, even if it came back indeterminate he or she should still not have said that it was positive. Jeez makes me worried about my results.

          I had something similar happen to me where they lied about my MRI results, they said I was stable when I clearly still having loads of lesions.

          If they don't come up with a good explanation, def go to a different hospital or even bring it up to the board of this hospital.

          Comment


            #6
            The hospital neuro isn't my neuro

            Thanks all. I was in the hospital for a week for a relapse & saw the hospital's on call neuro as my neuro isn't affiliated with that hospital.

            The hospital neuro told me I couldn't go on Tysabri if I'm JCV positive. Then later she told me my test result is positive which it isn't, it's negative. She also didn't send the blood to Quest but to another lab not approved by the FDA to do this test. So she just doesn't want to be involved with my case so she lied.

            And other hospital staff lied to me about other things also and clearly had shared their stories. For instance, one nurse told me that this doctor was a male before she came to evaluate me. The nurse said the male neuro and female neuro were a husband and wife team so had the same name. There is no husband neuro, they made him up. Complete fabrication. The nurse the male neuro would come see but of course it was the female neuro. Then after the evaluation, a doctor mentioned the neuro to me saying he instead of she but when I glared at him, he corrected himself and said she. So how bizarre is that? There were other lies told in similar fashion.

            Thing is, this hospital is about five miles from my house so I can't go anywhere else. But how can I trust them with my life especially if I'll be at risk for PML? I guess I could ask my insurance company about going 70 miles southwest to the NIH hospital in case that happens since that is my hometown, where NIH is.

            Thanks for all the concern. My neuro wants me on Tysabri whether I'm JCV + or - so I will go on it for sure. But isn't this just bizarre?
            ---------------
            "It's never crowded along the extra mile." --Dr. Wayne Dyer

            Comment


              #7
              I have never heard of anything like you have described There is no way I would ever allow myself to be treated there again and I would report them.

              I believe we must be our own advocates !!
              Linda

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                #8
                Thank you lindaincoloradpo, it is truly bizarre and I'm not sure what I'm going to do about it. We'll see what happens with the billing and if that is full of inaccuracies, then I'll be fighting. They kept telling me I wasn't admitted because of my MS and I kept having to straighten them out on that because ER wouldn't admit me for just a fracture but admitted me because of MS and not being able to care for myself (nor could my husband).

                I'm sure billing will be a long nightmare.
                ---------------
                "It's never crowded along the extra mile." --Dr. Wayne Dyer

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                  #9
                  I was on Tysabri for 30. Infusions before my then Neuro sent me for the blood test. all they did was JCV no titer. I didn't know about the titer then. It was positive they said I was not a candidate for Ty so off I came. I have been on Tecfidera for almost 2 years and Gilenya before that. My new Dr says my lymphocytes are getting to low may consider taking me off. He suggested Ty. I told him I was positive and he told me it depends on te titer. I went to have it drawn and they didnt order at the hospital to be drawn by quest and they caught it I had to go back to the dr. And make sure quest did it

                  Comment


                    #10
                    Reading what you wrote, about their being only one neuro with a single last name that people refer to as "he" or "she" and are confused about --all I could think was that maybe it's one doc who has recently undergone a gender reassignment?

                    Possible??

                    Comment


                      #11
                      No transgender

                      Naw I was told they were a husband and wife team. They were just making up crazy stuff and I've been thinking about what to do about it. I will probably pass it by my lawyer later down the road. Right now I've gotten a summary of charges from the hospital and it's unsatisfactorily vague. Perhaps I'll call the appropriate state commissions.
                      ---------------
                      "It's never crowded along the extra mile." --Dr. Wayne Dyer

                      Comment


                        #12
                        So while its definitely possible that mistakes were made or incorrect information given it is highly unlikely that medical professionals lied.

                        If this is truly what you believe I'd get another provider.
                        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                        Anonymous

                        Comment


                          #13
                          Originally posted by RockysMom View Post
                          Naw I was told they were a husband and wife team. They were just making up crazy stuff and I've been thinking about what to do about it. I will probably pass it by my lawyer later down the road. Right now I've gotten a summary of charges from the hospital and it's unsatisfactorily vague. Perhaps I'll call the appropriate state commissions.
                          Whatever was going on sounds bizarre, but unless you suffered irreparable harm due to their negligence, there's nothing your lawyer can do about it.

                          I've also never had a hospital bill that wasn't vague (have had more than my share over the years, and from different hospitals). The only times I've fought a charge was if I got a separate bill from a doctor who wasn't in our insurance plan.

                          Hope you are doing better, now.
                          Kimba

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

                          Comment


                            #14
                            With the utmost respect...

                            Originally posted by Jules A View Post
                            So while its definitely possible that mistakes were made or incorrect information given it is highly unlikely that medical professionals lied.

                            If this is truly what you believe I'd get another provider.
                            I have to say I find it naive that you think that medical professionals never lie. If they did not then the world would be a different place. In the corrupt, old boy network hick town I live in, most of our healthcare professionals are here because they have had previous complaints, probation, and injunctions against them. Not all, but many.

                            The neuro in question is not my primary neurologist but rather the on call neurologist of the hospital. She was actually my neurologist a number of years ago and I stopped going to her because of some problems I had with her.

                            That hospital has had many legal problems and is very poorly managed and was very poorly constructed as it is new.

                            The next time I see my neurologist, I will discuss with her being admitted to one of the two hospitals she is on call for sure I need to be hospitalized for a neurological problem.

                            I have received a bill from the hospital neurologist for $16 that we insurance company did not cover for her "services" and I have decided that I am going to write a letter asking her why she told me the test was positive when in fact it was negative and that I will pay her gladly when she does give me a satisfactory explanation.
                            ---------------
                            "It's never crowded along the extra mile." --Dr. Wayne Dyer

                            Comment


                              #15
                              Oh yea and

                              The ER doctor lied too. He told me I had a hairline fracture or in my ankle, and it couldn't be further from the truth. My fibula was sliced clean like a butcher had done it, down on the thickest part of the bone. Complete break and there is no way anyone would ever characterize it as a hairline fracture. He just didn't want to give me any healthcare he sent me home via ambulance mind you and then I had to come right back.
                              ---------------
                              "It's never crowded along the extra mile." --Dr. Wayne Dyer

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