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I upset my doctor

Discussion in 'Action Alerts and Advocacy' started by November Girl, Oct 27, 2011.

  1. November Girl

    November Girl Senior Member

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    ...though not with me.

    I printed out a copy of the ICC and took it to my neurologist. i also told him that if my neurological symptoms had been taken more seriously by my doctors over the years, they might have realized that my mild seizure disorder was not fully treated. (He has only been my doc for 18 months) and that I had lost a lot over the last 20 years. (With my brain recovered from the seizures, I'm able to manage my ME/CFS much better. I would have been able to have a child. I wouldn't always have been healthy enough to do all the caregiving myself, but at least would have been coherent enough to see that it was done.) I talked with him about the common neurological problems we PWC have, and how they had impacted me.

    So why was the doc upset? He has been diligent about reading all the journals, attending neurology conferences etc. He never saw a single reference to the neurological aspects of ME/CFS until his patient brought in the info. He had no idea that the World Health Organization classified it as a neurological disorder, as here in the US it's listed in rheumatology.

    He even gave me an email address for me to send him more info.

    The next week I took the same printout to my regular doctor. She also was glad to see the info, and I'll be bringing her more. Maybe between us we can get some of the testing and care I could only otherwise get from an ME specialist.

    I've been reading the full text of the Canadian Definition article, which includes much more discussion of symptoms and treatments. I'll be taking that to her next - or more likely the link. It's 150 pages long.
    http://www.wpinstitute.org/patient/docs/CanadianDefinitionME-CFS.pdf

    I'm going to ask my friends and family to take the ICC to their own physicians. I like that it is very clear and extensively footnoted. I think that at least some of them will take it to their docs. This is my personal advocacy - to spread some basic knowledge of this disease.
     
    justinreilly likes this.
  2. Andrew

    Andrew Senior Member

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    I'm glad you brought this up. I was going to take a copy of the ICC to my doctor, but completely forgot my plan to do this. Now I will.

    Recently, somewhere on this forum someone asked for information about physical proof one could show their doctor. I can't remember where it is now. If anyone knows which thread this is, please let me know.
     
  3. merylg

    merylg Senior Member

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  4. Enid

    Enid Senior Member

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    I had to do the same November Girl and take sections of Byron Hyde's "The Clinical and Scientific ........." to my Consultant Neurologist. He accepted in principle thought viral and couldn't aid. Can't say that it had any effect in my GP's Surgery still back in the bad old days of blood tests showing nothing therefore imagining it all. But that is UK so hope others will find more educated Docs. All that was 10 years go, surely all Neurologists should have heard about it by now. It is good to hear you are having such a positive response from your own Docs.
     
  5. maddietod

    maddietod Senior Member

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    Any of you got a link to what you printed out, to put in this thread? It makes it easy for anyone searching later.
     
  6. Boule de feu

    Boule de feu Senior Member

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    I will probably bring with me the info on Rituximab since my GP (of 18 years!) tells me each time I see him that there is nothing he can do for me because there is no treatment for what I have. I have never done that before. It will be a first for me... and for him! I know how he will react, but it is worth the shot.
     
    justinreilly likes this.
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    WOW, no treatment. He needs to read up a bit on CFS/ME. Lots can be done to feel better. Can you find a new doctor?
     
  8. justinreilly

    justinreilly Senior Member

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    I have looked at most of the current neurology texts and they are just as bad as the psychiatry texts. Not one had accurate info on ME. They either didn't mention it or said it was somatisation.
     
  9. Mya Symons

    Mya Symons Mya Symons

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    Wow, what great doctors you have. My doctor would have told me I was being a difficult patient and I should let her be the doctor because she has the degree or some such thing. Those doctors are keepers.
     
  10. Boule de feu

    Boule de feu Senior Member

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    I should have said that he treats each of my symptom individually, but he would never try something like an anti-viral...
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    No, I don't take antivirals either. My doctor helps me with supplements.
     
  12. *GG*

    *GG* Senior Member

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    Thanks for the link, I have not seen this 150+ page doc yet!

    GG
     

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