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    How should I approach a new doctor?

    Okay, so I've made an appointment with an Internal Medicene Specialist (with a minor in Geriatics) for next thursday. Brand new guy for me, and as far as I can remember, I've never been to his hospital/clinic before. The reason I'm going is that I'm still not convinced I've got MS. I want a fresh, unbiased, pair of eyes to look at me. Since my symptoms started 4 years ago (at age 62), I've seen 5 or 6 different neurologists. Each one DX'd me accordinding to their speciality, begining with cervical arthritis with ataxia, then spastic hereditary paraplesia, and ending when I was 64 with "well, we don't see anything else, so it must be MS" from the Mayo. MS was confirmed by the Univ of Iowa based on "well, the Mayo says MS, so it must be MS".

    Obviously, I've got to show this new guy my records, but I want him to think outside what it says on paper. What magic words do I say to him to make him go "hmmmm, maybe we should look at..."?

    #2
    Interesting question as I will be seeing a new doctor next week. I plan on going in with a list of questions (some I think I already know answers to). I am hoping to see how much give and take there will be.

    If you have concerns about your diagnosis, tell him/her about it. If you have specific reasons for you doubts, speak up. See what reaction you get.
    Tom

    "Blessed are the pessimists, for they hath made backups." Exasperated 20:12

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      #3
      Originally posted by TomRL View Post
      If you have specific reasons for you doubts, speak up. See what reaction you get.
      I agree with Tom. Your objective is to make the penny drop into the slot - if the doctor is savvy and experienced, your specific reasons for doubting the diagnosis might bring about a "cha-ching moment."

      From what I've read in your posts, your most prominent doubts involve the age at which you were diagnosed, and the fact that no clear-cut picture of your condition has emerged, despite a visit to the Ivory Tower (Mayo) - the authority of which many doctors are reluctant to question. In addition, each specialist you've seen recognizes only his neck of the woods: You need someone to take a broader view of your history, supported by a comprehensive examination.

      Tell the new doctor frankly that you need a new set of eyes - set him a challenge, but in a way that will intrigue rather than threaten him. Do not make it sound as if you expect him to denigrate the findings of other doctors - tell him that you only want the facts, whatever they seem (to him) to be, and possibly a fresh start.

      Good luck with this, and keep us posted!
      MS with cervical and thoracic cord lesions

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        #4
        Maybe show him your films with no radiology reports and ask what his first impression is?
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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          #5
          How to approach a doctor

          with a wallet full of cash

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            #6
            "Why are you here?"

            "I'm looking for a doctor willing to investigate alternatives for my symptoms".

            "You have MS. You're in denial. Get over it. We've got an excellent MS rehab facility here (75 miles from your home), go see them. Just to make you feel like we did something, we'll run some baseline blood tests and check for infection...but...you're in denial...you've got MS. So what if 1% have their first attack after 62...you're one of the lucky ones."

            Waste of time.....

            ...sigh...

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              #7
              Oh, man. I was wondering what happened. Yes, a waste of time...same old, same old. I am so sorry that this one turned out to be as dyed-in-the-wool as the others.
              MS with cervical and thoracic cord lesions

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                #8
                Originally posted by willingtocope View Post
                "Why are you here?"

                "I'm looking for a doctor willing to investigate alternatives for my symptoms".

                "You have MS. You're in denial. Get over it. We've got an excellent MS rehab facility here (75 miles from your home), go see them. Just to make you feel like we did something, we'll run some baseline blood tests and check for infection...but...you're in denial...you've got MS. So what if 1% have their first attack after 62...you're one of the lucky ones."

                Waste of time.....

                ...sigh...
                That is frustrating! Other than age, is there any other reason to think that it is not MS? Have you had a lumbar puncture done? While there are many false negatives (people who have negative results, but really do still have MS), it can sometimes still be helpful if the diagnosis isn't so clear cut.

                Does your symptom history fit MS? I assume they found lesions on your brain and/or spinal cord in the MRIs if they gave you a diagnosis. But it doesn't sound like a confident diagnosis when they tell you that it must be MS because they can't figure out what else it might be!

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                  #9
                  Originally posted by retto76 View Post
                  That is frustrating! Other than age, is there any other reason to think that it is not MS? Have you had a lumbar puncture done? While there are many false negatives (people who have negative results, but really do still have MS), it can sometimes still be helpful if the diagnosis isn't so clear cut.

                  Does your symptom history fit MS? I assume they found lesions on your brain and/or spinal cord in the MRIs if they gave you a diagnosis. But it doesn't sound like a confident diagnosis when they tell you that it must be MS because they can't figure out what else it might be!
                  LP's done a year apart. 2009 here, 2010 at the Mayo. One done here (and sent to the Mayo for analysis was clear...one at Mayo show O-bands. MRIs done in Des Moines (open) and Mayo (sausage tube). Radiologist in Des Moines saw nothing...Mayo reported 3 possibly 5 areas "without acuity".

                  Last "attack" was Thursday night after I had gone to bed. Woke up about 2am...fever, and chills that caused so much spasitcity and shaking I thought I was have a seizure. After an hour or so, fell back to sleep and woke about 7 with mild fever, no chills. Did my circus act to get out of bed, but too weak to stand. Needed paramedics to move me into living room. I was walking (shuffling) again by 2-3pm. In and out of bed on my own Friday night.

                  Comment


                    #10
                    I don't know what "without acuity" means as a way to describe the lesions found at Mayo - did they explain it? It sounds like your MRI and LP studies were equivocal, two sets negative and two positive - it could almost be your choice which set to believe, and I understand why you're not convinced that you have MS. It is a diagnosis of exclusion, after all, when others entities have been ruled out - and that in itself is troubling.

                    The National MS Society sponsors a forum called MS World, and a couple of years ago there was a thread about the high number of people diagnosed in their 50s and 60s. Apparently, the advent of better MRI technology has enabled doctors to diagnose MS in broader populations. But diagnosis remains a grey area in so many ways. To me, MS is primarily a label that's useful when forms have to be filled out and prescriptions written. With few exceptions, there's precious little that can be done for any of the "MS mimics," so in my more cynical moments I consider precise diagnosis a wash at best, an oxymoron at worst.
                    MS with cervical and thoracic cord lesions

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                      #11
                      Its my understanding that "without acuity" as far as lesions are concerned means "cloudy areas that may or may not be lesions, but if they are, they're not recent".

                      And, the problem is...their are mimics that are not only treatable, but curable. Hughes Syndrome ("thick blood"...I don't have that.) can be cured with blood thinners, including aspirin. C. Pnemonia infection treated with drugs that changes the bacteria into a form that still gets thru the blood brain barrier and, depending on outside stress, flares up from time to time...new antibiotics can clear this up in weeks to months depending on the individual (the test for this can take awhile...accepted treatment is start the drugs...if you're infected, the symptoms go away about the same time the test results come back). Lyme disease (I've had the blood test...negative)....again, antibiotics.

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                        #12
                        Probably what you need to do is that if you have another "flare"/episode of new symptoms you should ask for them to do another LP and MRI with and without gadolinium at that time. The fluid from the LP should be sent for various infectious/inflammatory tests.

                        If you did have an infection contributing, the LP fluid should have some signs of infection. Usually changes in the amount of white blood cells and protein, depending upon the type of infection. It is less common to have recurring flares with an infectious cause, but never say never. Some viruses can cause this.

                        You should try to find the best MS doctor you can and have them follow you so that you can try to get to the bottom of this, if you aren't satisfied. MS doctors also tend to know the "mimics" the best. I wish you luck finding a good doctor that you can trust, as you know yourself it can drive you crazy if you feel your needs aren't being met. A very good general neurologist could also be helpful, but that is hard to find. You would need to have a good doctor, or else they wouldn't know what tests to send. A generalist/internal medicine doctor would not know what tests to send, unfortunately.

                        Hang in there.

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                          #13
                          Im still waiting for my MRI results. this thread is pretty interesting. kinda hits home a little.

                          If it is Ms, there could be treatment. like unblocking an artery in your neck. have you had the ultrasound on your carotid artery's? im still waiting to do that.

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                            #14
                            Yep. Arteries clear.

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                              #15
                              Both the cerebrospinal fluid and blood should be tested for Lyme and other infectious agents, as hlh observed (above). I wonder if a visit with an infectious disease specialist would be worthwhile, since you are specifically concerned about neurological conditions that antibiotics can address.

                              Regarding the theory that MS can be caused by vascular abnormalities, congenital malformations of the jugular and azygos veins are implicated - not obstructed carotid arteries.
                              MS with cervical and thoracic cord lesions

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