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secretary called wow I got answers ( rant sorry)

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    secretary called wow I got answers ( rant sorry)

    just had an LP after having On in July folloewd by the steriods. MS neuro has been following me for four years now. He finally desices to do this and the secretary calls to tell me all came out negative NO MS. So I asked her "then what caused the ON. All she could say was do you have a follow up app? I am pissed to say the least. This Doc is an MS specialist here is St. louis and can't even get on the phone and call a patient after having an LP( which was horriable by the way)

    I have been seeing him for four years now and I am done!!!! with the MS crap. I have Rheumatoid already and I just don't need this. Before you go there yes lupus all others have been ruled out. He mentioned NMO but that is as far as that went no test or anything. Done

    Just to let you know when I was going through the ON in July even my PCP and eye doc could not get hold of him. I was my eye doc who did all the work and PCP who ordered an MRI. So if anyone thinks MS specialist are the end all think again!!!!!!!!!!!!!!!!!!!

    #2
    They do make you mad

    An LP is alone is not diagnostic of MS. ON is more so. There needs to be more testing done.
    A secretary cetainly can't dx you!
    techie
    Another pirated saying:
    Half of life is if.
    When today is bad, tomorrow is generally a better day.
    Dogs Rule!

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      #3
      Good luck getting an answer to why you had ON... It seems to me the only thing they can say is "I don't know" after they rule out Lupus and MS..

      In my case, they say something viral.. But thats it..

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        #4
        MS Speciaist are not all created equal. I was treated by a MS guru, trained in Italy, head of the local chapter of NMSS. Had MRIs with more lesions than the pathologist cared to count, small enhanced lesions even. He refused to dx MS.

        I assume that because in his opinion, my sx's didn't meet his standard, he would never give me a dx unless/until I was in a WC. My mobility was never my biggest complaint, but vision and cognative problems were pronounced.

        If my sx's weren't enough for me to at least consider that I might be losing my mind, this wack job decided that treating me as if I were was acceptable medical practice.

        I have since had my ms dx established, revoked after a move and new docs, re-instated twice since then.

        It does take a doc with the confidence to render a MS dx, and with the sensetivity to understand patients suffering, that withholding a dx is not likely to improve the patient or make them any worse than MS will in the long run. With meds that are now available there is every reason to render a dx early when criteria are met.

        They say the difference between God and MS specialist is God knows he's not a MS specialist.

        Have you tried a teaching hospital w/a MS speciality clinic?

        Comment


          #5
          Yes I do know there is no one test for MS but after having TN, ON nystagmus, balance problem oh it goes on and oh sis I mention a sis with MS, I am just done with out an answer form this guy.

          Oh and he is from the MAJOR teaching hospital here is St. louis. I am done with neuros all together.

          I had an episode back in 2004 that caused nystagmus that has not gone away and had four months of dizziness with it but I guess that does not count.

          Get this the last time I went to my neuro- opth at this same major teaching hospital he asked if they had dx the MS yet....that was before the ON can't wait tell I see him next month!

          There is no more testing to be done. I have had them all ct 'sMRI's, gastro you name it and all they tell me is it's a neuro problem.

          MSW1963 its sounds like you have been though the ringer as well. All I know is I do have RA and can see that from x-rays so I will treat that but as for this other I have had it.

          MSW1963 your right you pretty much have to be brought in in a wc but even now days I don't think that would get a dx.

          I think what really set me off it the fact that this phone call came month after the test (results were already in online) and it was not by the doctor but a secretary so I had no chance to ask questions.

          Don't tell me to call the office because he will get back in a month! Yes I need a new neuro but I am just finished all together. Anything happens I will just let the ER treat it.

          When I had to go back in for my blood-patch the ER was wonderful and shocked I could not get my neuro on the phone.

          Sorry for such a rant but I am mad today and I will get over it......tomorrows a new day move on right.

          Comment


            #6
            To the OP:

            I treat in St. Louis as well. Who was your doctor, and where did he work out of? When were your most recent MRI's? Definitely get a follow up appointment, and ask about all of this, but if you aren't comfortable with him, and if he's not cooperating with your treatment team, I'd definitely say it's time for a new doc.
            Diagnosis: May, 2008
            Avonex, Copaxone, Tysabri starting 8/17/11

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              #7
              He is out of Missouri B and I am finished. I have had a regular neuro and now the specialist and I will live with it.

              Its now worth the stress it causes each and every test or symptom to see it they are going to finally make the dx.

              It must not be that bad or the ON would have caused a red flag so I will go on. If I need on it the future I will be relucent to use one.

              Comment


                #8
                MSW1963, your experience with an MS specialist sounds just like mine! I have the lesions, have sx, but not the sx he acknowledges. I had all the rule out other stuff tests & he said he still didn't think it was MS. What is it then? He couldn't say. At least my PCNP at the neuro's office here accepts that it may be MS, we are waiting for the 2nd McDonald criteria to be met...another lesion, another major sx outbreak.
                artgirl...I am so sorry for your frustration! I would think you qualify the McDonald...why can't you find a dr who can do that for you so you can move on with some treatment or at least peace of mind? I wish you the best!
                "God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference" Reinhold Niebuhr

                Comment


                  #9
                  It sounds like you've been swept under the table, which is what what it feels like when the treating professional labels you as neurotic or undiagnosed. Take a deep breath and consider your self well rid of him. Now as far as treatment for your disease how will it differ if you have MS? Do you or will you take CRABS? Will your diet, activity regimes change. Most likely the RA already causes you pain and decreased mobility. Have you been approved for disability? Sometimes doctors act as though we work for them not vice-versa.

                  Comment


                    #10
                    Did I understand your post, that the MS doc acknowledges that you do have a yet to be dx'd neurological problem?

                    I heard that for a time too. The 'yet to be dx'd neuro problem' started to sound like someone was humouring me.

                    My ms dx was initially established by a female neuro. She poined out that not only did I have in excess of 20 small brain lesions, but that there was one small enhanced lesion the pathologist overlooked when preparing the written MRI report.

                    The MS doc knew and trusted the pathologist, so my MS neuro had the pathologist issue a revised/updated MRI report indicating the presence of the enhanced lesion on the older films.

                    The language was a bit less than straight forward, so when I relocated, I had a neuro say that after he read the updated mri report, he wasn't sure that it stated there was an enhanced lesion on the original MRI!

                    I had the films for him to look at, but that would require him to be qualified to read the MRI film, not just the reports, plus that it was a 5yr standing MS dx made by a MS specialist This was when Tysabri was taken off the market and rumor of a MS/PML patient who's MS dx was being questioned. I have come to the conclusion many Neuro were looking to be the first in their practice to 'correct' a MS dx, because we know how that dx is thrown around willy-nilly.

                    The next MS specialist I consulted looked at MRIs and said he didn't understand how there was a question about my MS dx, based on 3-4 sets of MRIs I brought with me.

                    The female MS neuro might be something for you to consider.

                    Comment


                      #11
                      I had the RA since 2001 and this (neuro thing) since 2004. In fact they rheumatoligist thought all my neuro symptoms at the time were from Remicade so I went off of it but I was sent to a neuro after I got the nystagmus.

                      The first neuro said don't ever use biologics for my RA so I have not and as of two years ago my wonderful PCP said Rituxan was ok because it works on both RA and MS.

                      I have had probably five MRI's since 2004 with no enhancing lesons and they all say something different. I really thought I was a hypocondryach until the ON but now I feel even worse.

                      I guess he needs more lesions .......I don't

                      No I am not on disability for the RA only because my hubby has good insurance and I will just keep it that way but damage is setting there every day

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