Surfnyc

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  • Surfnyc
    August 19, 2018 at 11:58 am

    I am about 2 years. Tapered 1 x 2 weeks,… then 1 x 3 weeks and now 1 x 4 weeks. I want to see if I can have a remission.

    Surfnyc
    August 19, 2018 at 11:53 am

    FYI and FWIW,…. I dink decaf.

    Surfnyc
    January 23, 2017 at 8:58 am

    When I was denied and my doctor was on vacation and I was told there was no covering doctor, they suggested I see a neurologist by going through the emergency department. I wondered if this set off alarms at the insurance company and all the sudden like magic they approved my in-home infusion treatments of IVIG for CIDP. I never got past the emergency department waiting room, having been seen by an emergency department triage nurse or PA. They were about to send me to for a blood work up, but I told him it was not necessary, I was just there for a neurology consult to push the insurance company along. My neurologist and their office is affiliated with the hospital emergency department.

    Surfnyc
    August 31, 2016 at 6:30 pm

    I couldn’t figure out how to start a new topic, so I’m replying to this old one. If I could’ve named this topic it would’ve been:

    Social Security and NYS

    If anyone is reading this and qualified for New York State Social Security Disability and has CIDP, please tell me if at first you were not approved. I can work part-time doing some computer consulting, but the bulk of my work was as a lighting technician in film and television production, which also involved driving trucks. My onset was with GBS and put me in the hospital for 7 days and then inpatient rehabilitation for 10 days and then outpatient physical therapy, of which insurance wouldn’t pay for anymore because I was getting worse with CITP. I find it very uncaring and hurtful, that the state that I have lived my whole life would say that I’m not disabled when I am walking with a walker, almost bizarre that they would tell me – you’re not disabled. Granted, I can walk with a walker and I can do some work, but I have lost 80% of my income.

    Surfnyc
    July 22, 2016 at 4:20 pm

    Any neuro. docs here? Or anyone that can give me their interpretation of this EMG with NCV.

    https://www.dropbox.com/s/okj1no090qnmawu/EMG%20with%20NCV%20pgs%202%203%20and%204.pdf?dl=0

    I’m going to my new doc.,…. : https://weillcornell.org/rlchin ASAP

    I’m on the 3 GBS Facebook groups too.

    Mahalo and aloha,
    Brendan

    This GBS is really f in’ with my surfing!