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Appointmemt with internal medicine doctor - what should I ask for ?

Discussion in 'General Treatment' started by Dechi, Mar 18, 2017.

  1. Dechi

    Dechi Senior Member

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    Hello,

    My GP, who knows nothing about ME, wants me to see an internal medicine doctor. This doctor will most probably know nothing about ME either. He or she works at the same clinic as my GP. I have seen an internal medicine doctor last year, and he refuted everything I wanted to be tested for and said he treated cancer and could do nothing for me... The reason why I am going to this internal doctor is more of a courtoisy and to maintain a good relationship with my GP. He is all I have close to me right now, my specialist is many hours away.

    Since then I have had a formal diagnosis of ME following a SPECT scan that showed moderate to severe hypoperfusion to many areas of the brain. I was also thoroughly tested for orthostatic intolerance by a soecialist and tested negative (the spect scan concurred with that finding).

    The ME specialist who diagnosed me is having me do a gastric biopsy to find traces of enterovirus or other viral infection. He thinks I might have enterovirus 68. I am still awaiting for an appointment to be made for me, so not much is moving in that department for now.

    Can an internal medicine doctor help me find out what I was infected with ? Are there specific tests that I should ask for to help with that matter, or any other one ?

    Since I have a diagnosis, finding out what infected me will help is meant to help me find treatment to relieve some of my symptoms.

    Do you have any advice to share ? Thanks ! :)
     
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  2. Dechi

    Dechi Senior Member

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    Nobody ?
     
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear @Dechi,
    Even if infection precipitates ME/CFS there does not seem to be much evidence that you gain anything trying to find out what the infection was. I assume that you have been referred to a physician to make sure that there is not some other diagnosis that might be missed. If the ME/CFS diagnosis is right then the physician may or may not have some useful practical advice but so far we do not seem to have much information on what specific treatment might be useful.
     
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  4. Dechi

    Dechi Senior Member

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    @Jonathan Edwards I think my GP is just trying to help me in general. With no specific plan. My ME specialist wants me to have a gastric biopsy, to find out what enterovirus I have, even though, as you say, chances that me find anything to relieve my symptoms are slim.

    For myself, I would like very much to know what I am infected with. If only to get rid of the weird breath I have that sems to be from a troubled gut...
     
  5. Kati

    Kati Patient in training

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    HI @Dechi I am sorry to have not answered earlier. i thought hard for an answer for you.

    My experience with internists in Canada has not been good. They go by 'Up to Date' or Cochrane reviews standard of care. CBT and GET for ME. i actually went for my ankle which had been killing me for years, with a positive CT scan. And they felt obligated to look at the whole picture, and when I told them I had Me and was spending 22 hours in bed, they wanted me to get CBT and GET.

    As for my ankle, it took another doctor, to be told I owuld need surgery. in fact I am now 3 surgeries later, and will likely need a 4th one.

    I hope you will get a better experiene I got and that they will take your testing into account. My suggestion is to express clearly what your concerns are - abnormal SPECT, enterovirus. What do you need for him ( ? Neurology consult? Treatment for EV? ) Bring someone with you if at all possible.
     
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  6. Dechi

    Dechi Senior Member

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    @Kati thank you for your answer ! :)

    I thought I would ask for testing viral infections, and I was hoping someone would have the name of a useful test to ask for. I will bring my diagnosis letter and brain mapping showing abnormalities. We'll see after that. I am not hoping for much, I am basically going to please my GP.
     
  7. Kati

    Kati Patient in training

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    Here in BC you cannot get viral titers (EBV, CMV, HHV-6) unless you are a transplant patient or an HIV patient. You would then be getting a positive or negative for EBV Igg, and a positive is pretty useless since 90% of the healthy population is also positive.

    As for enterovirus, I doubt that the internist would be impressed nor would he know how to treat that but I am willing to stand corrected if proven otherwise.

    It's really tough out there for us ME patients, including in Canada. Doctors simply do not have time,interest or even power to deal with stuff they don't know. :(
     
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  8. Kati

    Kati Patient in training

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    This said I think our best bet as Canadians is to press on advocacy. We need to push on a solid and collaborative research program and get a medical specialty assigned. Then we will see change affecting patients' lives
     
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  9. Basilico

    Basilico Florida

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    Which specific gut issues do you have? I might be able to suggest some testing for that.
     
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  10. *GG*

    *GG* senior member

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    Concord, NH
    Should you be tested for Lyme disease? Is that found much, if at all, in Quebec? Had you traveled to a known Lyme area before?

    So your Internal med Dr is in Canada, correct?

    GG
     
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  11. Dechi

    Dechi Senior Member

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    @Basilico Well, besides being very gassy (sorry) and the occasionnal stomach cramp with pain, I guess I don't have much issues. I used to have chronic diarrhea but I don't since I went gluten free. I am also dairy free. Enterovirus live in the gut, so that's where we have to look for it. I'll take into account any suggestion !
     
  12. Dechi

    Dechi Senior Member

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    @GG yes, we have ticks in summer and lyme cases, but not so much. I don't think I've ever been bitten by a tick. My daughter was when she was 3, but I had the tick tested and it wasn't a carrier.

    Yes, the internal med doctor is in Canada, but chances are he or she will be fresh out of college. Good thing is they are really good listeners and not so judgmental as their older peers ! ;-)
     
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