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Thread: How should I approach a new doctor?

  1. #11
    Senior Member willingtocope's Avatar
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    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.

  2. #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.

  3. #13
    Moderator jody's Avatar
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    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.

  4. #14
    Senior Member willingtocope's Avatar
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    Yep. Arteries clear.

  5. #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.

  6. #16
    Senior Member willingtocope's Avatar
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    Infectious Disease specialist...that's what I've been looking for. But, I'm out here in the middle of nowhere iowa, and if you haven't got four legs or a beak, they don't exist.

    Maybe Des Moines, or Iowa City, but I've got to let DW get her cataracts fixed before I can organize another road trip. That puts it back to at least mid August.

  7. #17
    Quote Originally Posted by willingtocope View Post
    Maybe Des Moines, or Iowa City, but I've got to let DW get her cataracts fixed before I can organize another road trip. That puts it back to at least mid August.
    Something to plan for, maybe...you could use the time between now and August as a research period, looking into the best infectious disease docs in Des Moines and/or Iowa City.

    Hope all goes well with your wife's cataract surgery!

  8. #18
    Senior Member willingtocope's Avatar
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    One good thing about this little town...its 30 miles away from one of the top 10 cataract surgeons in the states. He did mine in March...a week apart. I now have 20/30 in both eyes. No pain, no discomfort, no sweat.

  9. #19
    Quote Originally Posted by willingtocope View Post
    One good thing about this little town...its 30 miles away from one of the top 10 cataract surgeons in the states. He did mine in March...a week apart. I now have 20/30 in both eyes. No pain, no discomfort, no sweat.
    That is so good to hear! It is wonderful that you live close to one of the best surgeons for that procedure.

  10. #20
    I really don't think a regular infectious disease person will help you. They will not have enough knowledge about neurologic symptoms/examination, LP/MRI etc.. and will have not seen patients like you before.

    There is a very very rare speciality of Neurologists with an interest in infectious disease. Many of them focus on the neurologic manifestations of HIV, but some are broader.

    Didn't you say you were seen at Mayo once?

    They list a person who specializes in Neuro-infectious diseases.

    http://www.mayoclinic.org/neurology-rst/neuroid.html

    Dr. Aksamit. Sounds like he is quite experienced. I would just email him, and ask if he can recommend someone nearby. Or go see him.

    So infectious disease people will want to know everything about fevers/chills, rashes, exposures (travel history/animal contacts), lumps and bumps, joints and eyes, immunizations. So have a detailed history of all of that, and how things correlate with any of your attacks/symptoms.

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