Update – March 1, 2017

Today I met again with my rheumatologist. She said pretty much all the tests she can do, have been done.   She referred me to an ophthalmologist who can check for Sjogren’s, though she told me, based on my blood tests, its 99% ruled out at this point.

There appears to be consensus among the 3 neurologists I have seen, that the next step would be for me to go to the Mayo or Cleveland Clinic.   And after that, there is no more that can be done.

On the positive side, the past week has been quite good, and my pain levels have been on the low end.   I think I’m developing a good understanding of my own limitations, and what activities I am able to do without over-exerting myself. I do know the cycles seem to go in ebbs and flows, and so I’ll seek to better manage these cycles to the best of my ability.

Given the limitations of modern medicine, I’m trying to embrace more the spiritual side of healing, and am shifting this towards my primary focus.   I’ll write more about this in future entries.

2 thoughts on “Update – March 1, 2017”

  1. You and I have much in common. Perhaps we could talk? I went to Mayo for a different problem but they were not helpful. I have sfn and until recently I was on IVIG but they took me off because my bloods were weird. I am now having a million tests. The IVIG helped but it was very unpleasant. Anyway I would love to talk further

    1. I am sorry that the IVIG did not work out. Hopefully your tests will lead to some form of treatable cause.

      You are welcome to email me at support@smallfiberneuropathy.org

      I’m thinking of setting up a message board soon, where people who are experiencing the same things can collaborate with and support one another.

      Hopefully you are feeling as well as possible today.

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