Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

My first good appointment .

Discussion in 'ME/CFS Doctors' started by jpcv, Apr 14, 2017.

  1. jpcv

    jpcv Senior Member

    Messages:
    154
    Likes:
    336
    SE coast, Brazil
    Hi folks
    After two years, I finally had a good appointment with a fellow doctor.
    She is a neurologist, has lots of experience with multiple sclerosis and all kinds imunotherapy .
    We talked for about 90 minutes, she reviewed all my exams, did a good neurological examination.
    Positive points
    -She was really interested in my case
    - She is not affraid of using imunotherapy
    - She says that CFS/ME is not fibromialgia
    - She says that autoimunity plays a important role in the disease
    - She said pregabalin is not the answer
    not so positive
    -She doesn´t have lots of experience with mE, she hasn´t been following many patients( she does clinical research in multiple sclerosis so she sees many MS patients)

    After one hour she was still talking, a bit of brain fog was setting in ( around 9:00 PM, I Had worked all the afternoon) so I have to organize my final thoughts on the appointment.

    My impression is that , altough she is not the most experienced one , she is someone interested in my case, and she is willing to dicuss diferent approaches to the disease like IVIG or Rituximab
     
  2. Dechi

    Dechi Senior Member

    Messages:
    881
    Likes:
    1,625
    I am happy for you ! Sometimes having a doctor who's willing to help and invest themselves will be more helpful than someone more knowledgeable, but closed minded.

    You can bring all sorts of good info to her and ask for tests and treatments and she will have the will to at least consider it seriously.
     
    Sancar, jpcv, Shoshana and 3 others like this.
  3. *GG*

    *GG* Senior Member

    Messages:
    6,111
    Likes:
    4,693
    Concord, NH
    Glad you had a good appt. But if you are rather functional, I would be Very cautious with strong Immune modulating drugs. Seems like lots of people do not do well with those drugs, and it drags them down to new low levels, for how long? I am not certain!

    GG
     
  4. Shoshana

    Shoshana Northern USA

    Messages:
    1,294
    Likes:
    3,995
    Northern USA
    @jpcv

    I am very glad to see your update and post, today!

    That is mostly good news.
    Of course we wish for an even better matched doctor for our illness,
    but she does have some positive points.

    I am glad for you, and it lifted my spirits, today,
    so I am glad you shared that with us!

    There is a possibility that something good can come from this, for you,
    that we cannot foresee right at this moment.

    I hope so.
     
    jpcv likes this.

See more popular forum discussions.

Share This Page