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  • #31
    If I trust the doctor?

    This is the guy who never bothered to MRI my spine and told me that my TM would not progress so there was no need to keep coming back.

    No, I don't trust him. I just don't know where else to go. I suppose if I had the resources I would go see Dr. Kerr in Baltimore. That is not really an option.

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    • #32
      I know, it was kind of tongue-in-cheek. But he does seem to have been chastened by your reappearance, and he's asking the questions and running the tests he should have done before. It's not much consolation, but even Mayo isn't satisfactory 100% of the time (as some members here will attest), and almost no one has the money to chase down second or third opinions - or even the first opinion, nowadays. We do the best we can with what we've got.
      MS with cervical and thoracic cord lesions

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      • #33
        That's it. Guess I'll just see what happens.

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        • #34
          Did your diagnostician consider Multiple Sclerosis

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          • #35
            dr. kerr

            sunny daisy, dr. kerr is no longer at john hopkins in baltimore he left for a job with a large pharma in boston. he was my doctor at the time he left. sorry poobear

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            • #36
              Guess the disease

              I had my MRI on Monday. I had 15 blood tests 3 or 4 weeks ago. I still have no results.

              I talked to the counselor at the MS Center (where my neuro referred me). She is helping me with stress issues. I feel like some issues where I work and with my family have stressed me out a lot and made this thing worse.

              She did not talk to the doc, but she read my chart at the neuro's office. Turns out this doc never did really think I had TM, even though 2 other neuros had diagnosed me with that. So, now I guess I do not have TM.

              She says, "Dr. X wants to be very sure you have MS before he diagnoses you with it. He does not give out this diagnosis very easily." Then she says, "The good thing is that since it is hard to diagnose, it means you have a mild case."

              Huh?

              So, now I don't know what I have. I don't know what to think. I don't know what to do. I feel very confused and discouraged.

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              • #37
                Bless your heart, I know something of what you are going through because this is like deja vu regarding my own diagnostic process - it took years. But whereas I had no diagnosis at all for a long time, you had one (or so you thought!), and now you need to get your mind around a whole new paradigm which has not even been defined.

                If you had your MRI on Monday, it will surely have been read by now - blood tests done 3-4 weeks ago would have been completed within a week of the blood draw except for those involving cultures or neuromyelitis optica (NMO). So...in your shoes, I would get very proactive and call the neuro's office on Monday, telling the receptionist that you need to know your results and what they mean; ask for the next available appointment.

                It is true that neuros do not make typically make the diagnosis of MS lightly, but if yours never thought you had TM to begin with (passively endorsing others' opinions for 16 years!), the abdication of his role as diagnostician is difficult to understand. He has now sent you to an MS counselor - absent a definitive diagnosis - for help with managing stress to which he, himself, has been a major contributor.

                This sort of thing infuriates me, and - alas - it is not uncommon. But that doesn't mean it's acceptable. You've done your part, now the neuro needs to do his. Period.

                Thank you for this update, SunnyDaisy. I've been wondering what happened regarding your tests and diagnosis and am terribly sorry that you are going through this.
                MS with cervical and thoracic cord lesions

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                • #38
                  Thank you, Bonnette. Your posts always encourage me. I am out of words tonight. I just feel totally drained.

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                  • #39
                    All the tests were normal except I have mild arthritis in my neck. I guess that is kinda normal for my age as well. He had his receptionist call me with the results after I finally called and asked if they were in yet. He wants me to come back in 4 months. I said forget it. He hasn't found anything thus far. What does he expect to see in 4 months? This is craziness!

                    I want to find another neuro. I don't know how to find a good one who will realize that this disease is devastating my life, that I cannot afford to lose function and need to start some kind of treatment if possible, and try to help me. Someone who cares, or at least is capable of pretending, would be nice. But, even if they can't do that, if they could at least earn their pay, that would work.

                    Sorry if I sound ugly. I used to be a patient patient, but after 16 years of this, I am a bit cranky!

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                    • #40
                      You don't sound ugly at all...you sound like an intelligent frustrated human being and I think most of us can relate!! I would have done exactly as you did and refused to return in four months. What on earth would be the point?

                      So...nothing except arthritis showed up, after MRIs with and without contrast, and 15 vials of blood? Wow. You do need another opinion, but I am clueless as to how you'd go about finding a good neurologist in your area. After 16 years of this, I'm sure you would have heard through the grapevine if any such animal existed.

                      Telemedicine might be a possibility, in that "experts" elsewhere might be able to look at your MRIs from a distant location. But money is the eternal issue for most of us, and that would probably cost a bundle. I think your best shot might be to wait for a few days, then make an appointment with your present neuro so that you can speak directly to him and not a mouthpiece - pin him down as to diagnosis: If it's not TM, what is it? Make him at least express a professional opinion.
                      Last edited by Bonnette; 02-16-2011, 03:20 AM. Reason: correction
                      MS with cervical and thoracic cord lesions

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                      • #41
                        Misdiagnosis

                        Hi SunnyDaisy,

                        I thought I had been suffering recurring/remittent TM for the past 24 years, and only just now discovered I actally had a cavernous malformation that was hemorrhaging periodically within my spinal cord and causing my step-wise deterioration. I underwent a complete resection on March 21st and I am still recovering. My full story can be found here:

                        http://spinalcordtumor.proboards.com...ay&thread=1407


                        Come to find out, TM has been a common misdiagnosis for this. Was your MRI done with contrast? These lesions can be invisible without it...

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                        • #42
                          I've been reading about TM and it says it can be the start of the onset of MS.

                          TM is hard to believe for me..... from perfect health to paralyzed in less than a day in some cases.

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