what is the most effective way to speak to doctors?

    • Anonymous
      October 24, 2009 at 9:31 pm

      ok only up until this year I did the uninformed aproach and that got me no where. now I am a varacious internet lunatic with epidemiological rants that is not working either. so now I am thinking that when I go in I should just be short and consise with details that only pertain to classic CIDP. Ill say my background with GBS and then burning, cramping, syatica type pain, legs weakness numbness, areflexia. all the other symptoms, the vertigo, the ana, the arthritis yadayda need not be mentioned at this point. I will use regular jargen.

      let me know your thoughts on what middle ground has worked for you

      also I have created a spread sheet that looks like this

      …………2002, 2003, 2004 etc
      blood tests
      other tests

      so that they dont have to thumb through all the files of tests results to see what is inside if they dont have the time.

    • Anonymous
      October 24, 2009 at 10:17 pm

      I have a little advice on this subject.
      First, come prepared with information as you have–organized and relatively concise with the results of tests and notes of previous doctors and copies of the MRI/CT scans or EMGs.
      Second, pick what symptoms are the most annoying to you and tell what effect that they have on life and why it is important to you. For example, the aching, cramping pain makes it really hard to get rest at night or to walk through the grocery store.
      Third, come with about five questions that are really important to you and that can be described as practical. For example, is there a better way to manage the burning pain in my legs? Prioritize which is the most important for you to have addressed.
      Fourth, try to come with a goal to have a team approach to your problems that will involve the doctor and you and whoever else will need to be involved in your case (physical therapists, rheumatologists, etc). Be respectful of the contribution of each member to care as you expect them to be respectful of what is important to you in your care. It is better not to dwell of the problems in the past, but to try to look forward to how things might be better in the future.
      Fifth, don’t expect it all to be made right in one visit, but do hope that a plan of addressing things is made and that at least one or two symptoms are better managed. Progress is progress.

      The Neuropathy Association sends out weekly email Hints to help people with Neuropathy and these were sent out recently. They are based on the book listed at the end.
      What to Tell Your Doctor: Dr. James Dillard’s OPQRST System

      Bob Williamson, Neuropathy Association support group leader from Virginia Beach, Virginia, shared Dr. James Dillard’s handy OPQRST system of keeping a list to show your doctor. It’s another way of recording your symptoms:

      O = Onset. When did the pain start?
      P = Provokes. What provokes the pain?
      Q = Quality. What does the pain feel like?
      R = Radiates. Does the pain travel or stay in place?
      S = Site. Where do you feel the pain?
      T = Timing. When do you get the pain and how long does it last


      What to Expect When You See a Neurologist

      Before you choose a neurologist, talk to people in your support group and ask them to recommend a doctor. Above all, find a neurologist who is board certified in neurology and trained in neuromuscular neurology. You don’t usually buy the first car you look at, so be finicky about choosing a neurologist-who will probably outlive your car. And try to find one who is a good fit with you from a personality standpoint, someone who makes you feel comfortable.

      A neurologist is what you need, a specialist who deals with testings and evaluations of frightening problems that other doctors may not have explanations for. And you are going to see him about tingling and burning? Yes, you are. If it’s annoying, frightening, or painful enough, causing you to lose sleep, forcing you to struggle to stay employed, or changing your style of life then, yes, you are going to see a neurologist.

      Bring your pain diary. Your organized history will show the doctor you’re serious about your illness and she’ll appreciate your coming to the point. Your neurologist will want to know 10 things:

      How would you describe your symptoms?
      When did you first notice them (onset and progression)?
      Has the pain changed your quality of life? Has it worsened? Lessened? Stayed the same?
      Are you taking prescription medications? Over-the counter ones?
      Do you take supplements?
      Do you have any other medical conditions that exist now? Ones that existed in the past?
      How are you being treated for them? What medications?
      Does anyone in your family have neuropathy, or did anyone?
      Do you have sensations in your hands that mimic those in your feet or in any other parts of your body?
      Was there an event that might be causing nerve compression?


      What to Ask Your Doctor About Tests?

      Here are seven questions to ask your doctor taken from Working with Your Doctor, by author Nancy Keene:

      What is the purpose of the test?
      How will it contribute to diagnosis or treatment?
      What are the risks associated with this test?
      Are there simpler, less risky ways of getting this information?
      What are the side effects, and how often do they occur?
      How reliable is this test?
      How reliable is the testing facility?
      Be sure to take notes, and if the doctor is talking too fast then say, “Slow down!” Perhaps bring a tape recorder with you and record all this information along with the results the next time you go into the office. The best memory goes by the wayside at a doctor’s office. Ask for a copy of all your medical records, especially tests. Save them.


    • Anonymous
      October 25, 2009 at 2:31 am

      wow I am going print this out. thank you so much for taking the time to put this up. thank you rocky and linda for raising this point and thank you ken cuz I am going to see the internist at scripps ( I have to start with a reg doc) then from there I will request your doctor. unfortunately the appt is in la jolla but hopfully they can connect me your doctor. I am honing my game plan. I will be riding the 15 alot but so cal is a nice place to visit.

    • Anonymous
      October 25, 2009 at 12:45 pm

      As someone who’s just beginning this process, I really appreciate this thread. I, too, have had these questions and doubts about how I’ve presented information in the past.

      Thanks, Tara, for posting this question, and to everyone else who has respnded! Your experience is invaluable!


    • Anonymous
      October 25, 2009 at 10:49 pm

      Excellent, excellent advice.

      My only contribution would be this. Before a diagnosis you need to provide answers to their questions first, and ask them questions second.

      After diagnosis you are working on a treatment regimen and following its performance, so I reverse the process. I tell them how I am doing and then let them ask questions. After that I ask questions. I try to take a list of current complaints and issues, address them and then move on to future treatment options (if the current one’s aren’t working)

      You have to develop trust and confidence in your Doctor. Without that, there is nothing. (In my humble opinion)