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Please help - Questions for my Doctor

Discussion in 'General Treatment' started by SDSue, Aug 2, 2014.

  1. SDSue

    SDSue Florida

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    After 2 months, all blood work is back and I am scheduled a follow-up with my doctor very soon. I'm excited and cautiously optimistic to finally begin real treatment with a bonafide ME specialist.

    As I prepare for my visit with the doctor, I could use some help. What do you wish you had asked your doctor as you began treatment with LDN, antivirals, inosine, and/or other meds? Thanks so much.
     
    AndyPandy and Gingergrrl like this.
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Can I suggest you change the title of this? This sounds more like you had regrets in the past, not that you need advice for the future.
     
    SDSue likes this.
  3. SDSue

    SDSue Florida

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    Great suggestion. How does one do that?
     
  4. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    There should be a box on the top right of the tread that says edit title.
     
  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    One thing that is important to me is to be a partner with my doctor. I want to be able to suggest things I want to try that she may not be aware of and have her support me. I have that now with my NP and it's HUGE!
     
    AndyPandy, heapsreal, rosie26 and 2 others like this.
  6. SOC

    SOC Senior Member

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    Very likely you are going to be completely overwhelmed taking in all the information you're going to get from the INIM doctor at this appt. Trust me, it's a TON of information. My advice is to prepare yourself to listen this time (no mean feat at the second appt). Bring a recording device if you think it will help.

    Just taking in everything she'll tell you about your lab results and diagnoses is more than enough for an ME brain. Even those of us who bring healthy people to help us record/remember don't always get it all. Even the healthy people get overwhelmed with the information dump. ;)

    You'll get lots of paperwork (lab results and possibly additional lab requests for your local lab) at the appt. Take it all home, pore over your notes and lab results, and then set up a phone appt to ask any questions you still have once you've had time to absorb it all.

    The second appt with a top ME/CFS specialist is often both exciting and stunning. You learn a lot about what's going wrong in your body, which can be both disturbing and a relief. You might have multiple new therapies to understand and start. Be prepared for a certain amount of emotional overload. Things are finally happening! :balloons: At the same time, seeing so many abnormal results can also be frightening. :eek:

    If you feel confident you will have questions, don't try to ask them at this appt. Set up a phone appt while you are there and ask your questions then.
     
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    In the top right hand corner is says thread tools. Click there. Choose edit thread!

    Sushi
     
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  8. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Having a follow up phone app may not be possible if 1. It is cost prohibitive and 2. The doctor may be booked and not have the time. Also I never had a doc overwhelm me with stuff like SOC h
    I used to take a tape recorder and if you have someone to go with you to take notes will help.

    I wouldn't worry that much to be honest. Write down questions you may have and bring them to the next appointment.

    I would just want to make sure the doc has a plan and you have an idea what it is. You're not gong to do every in the first visit anyway.
     
    SDSue likes this.
  9. SOC

    SOC Senior Member

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    You've never been to INIM, have you? Have you seen any of the top ME/CFS specialists who do extensive testing and provide multiple treatment protocols? These are not your average GP or ND.

    Trust me, the INIM docs have a plan at the second appt. That's the whole point of the second appt.

    1) Phone appointments are not expensive compared to office visits, which are also reasonable at INIM
    2) The INIM docs have time blocked into their schedules for phone appts with their established patients, so it's not like you have to wait forever for a phone appt. Follow-up phone appts are part of routine care at INIM.

    At the first INIM appt they run a boatload of tests, all of which the doctor will report about at the second appointment. That's a lot to keep track of. Patients also get their treatment protocol at that appointment. That alone can be complicated. The patient might also get "assignments" and paperwork to do future labs, which the patient has to keep mentally organized. So yes, it can very well be overwhelming.
     
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  10. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @SDSue, I can't comment on INIM, but I can tell you I did at OMI. At the first appt, he took a detailed history, did an exam, ran all the tests, and we booked the date of my follow-up appt. I was able to do the follow-up in person but if this had not been possible, it would have been over the phone or Skype.

    I made a list of all my questions (prior to even knowing my results) which I e-mailed to the doctor b/c he had said this would be okay and then he'd know the questions before I even arrived. At the follow-up appt, he started by reading me aloud his typed summary of my history b/c he wanted to make sure he did not miss anything and got it correct. After this, we went through my test results page by page and in the process of doing this, he noticed some discrepancies and a test the lab forgot to run, plus some tests he wanted to add (so I did some follow-up blood work after the appt which should be back in 1-2 wks.)

    Then we talked about which anti-viral I would be taking, which other supplements, MTHFR stuff, and went through all my other questions. In my case, he wanted to talk to my cardiologist re: a test he strongly wants me to have so we talked about that as well. I am the kind of person with endless questions so I tried to prioritize them before the appt and do the most important ones first in case we ran out of time.

    The information was overwhelming to me but but confirmed beyond a shadow of a doubt that I have current, active EBV and my NK functioning is almost zero (in addition to all the autonomic problems.) He asked me to e-mail him the info to contact my cardiologist so when I did, I asked a few other questions and he answered pretty quickly. I do not have any follow-ups scheduled at this time (as it is a six hour drive to get there) so in about a month once I am fully established on his full protocol, we will talk on the phone.

    I guess my best feedback is to write down ALL of your questions ahead of time and then prioritize them so you are really focused in the appt. Also, it will be a tremendous amount of info and impossible to take it all in at one sitting and it is normal to feel overwhelmed.
     
    Valentijn, SOC, SDSue and 2 others like this.
  11. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I don't know who they are nor did I see where she said specifically where she was going. Nor can I read most of your post because it's overly complicated for my brain.

    My comment was just as much for sdsue as for others who may be seeing another doctor who is not some big expensive fancy they can't afford, but still may have some questions anyway.
     
    SDSue likes this.

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