Who knew?

Home Forums Meet and Greet Who knew?

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • #10895
    Outaboutoutabout
    Participant

    Last winter I asked my primary why my fingers turned snow white? He said “sounds like Raynaud’s.” That was it. February, 2018 I had a pedicure which got infected. I have had a million treatments including many, many antibiotics, bone biopsy, six weeks of pic line with IV Vancomycin and had the top of my big toe removed in July. Long story short, went to two doctors at Johns Hopkins, whereby, the first doctor looked at my toe, then asked me to remove my other shoe/sock. Within 5 seconds, he said “you’ve got Raynaud’s.” I still have NO CLUE what he saw that he could diagnose that so quickly. Needless to say, the plans have begun. Calcium channel blocker, Sympathetic Ganglia Block, another MRI …. he said “all that I had gone through for almost EIGHT MONTHS was NOT going to heal my toe because of the “lack of energy to that area.” Does this resonate with anyone? I’m soooooooooooo confused! Thank you.

    #10896
    LoisDLoisD
    Moderator

    Dear Outabout,

    Thanks for the post, and sorry you have had a rough time this past year. To answer your question about the diagnosis. Your doctor most likely diagnosed Raynaud’s by observing the color changes and tissue damage to your cuticles, not sure, however, there is no formal test for Raynauds, so the MD bases it on what he sees.

    It appears that the IV drug you were given prior to your diagnosis fights infection, but does not help rebuild circulation. Again, assuming that’s what he means when using the phrase(lack of energy). One drug that is used to do that in severe cases is iloprost, also given IV in the hospital.

    The doctors at Johns Hopkins are excellent and the game plan they’ve mapped out sounds like a good one. You’re in good hands now!

    Best of luck to you and keep us posted,

    LoisD

    #10897
    Outaboutoutabout
    Participant

    Thank you for your nice reply, Lois D. Feel fortunate to find this website! All the best, Kathleen

    #10902
    LoisDLoisD
    Moderator

    Thank you for the kind words Kathleen!

    LoisD

Viewing 4 posts - 1 through 4 (of 4 total)
  • You must be logged in to reply to this topic.