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not much hope for reasonable medical care... my story RMMS

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    #1

    not much hope for reasonable medical care... my story RMMS

    I myself am walking a tightrope with my health. I got sick 2008.
    I am sick and suffering. I have no doctor... I have continued to try to find one
    I am sick and suffering and am without any sort of medical care as I got blacklisted by my Neuro. I have RMMS and viral issues for a start... my husband suffers, friends are gone, I couldn't keep up. In NYS Dr.s can do anything they want. That is the lesson I am being taught.

    I got to try copaxone , had a horrible reaction, got sicker and then was told I had no options for treatment. I would not find a doctor in my area and I had an infection I should have someone look at. He then dumped my care, Urgent care will not even treat me. WHY am I being made to suffer in NYS? WHY WILL NO ONE HELP ME OR MY FAMILY? HELP.

    My kid is also sick with a neuro condition... I am the care giver. I am useless
    I need to be UNBLACKLISTED. I can not get reasonable care of any type and have been told by the NYS Medical Misconducts board "Doctors can do anything they want with medical care."

    It feels like they killed me with the way I am suffering without any help.

    this is my story I got blacklisted fall 2013. can someone help?
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    #2
    I wish that I could offer some help ! Your post is heartbreaking ! I think that you need legal help . Try getting in touch with your county's social work department. You could also make contact with the local office of the National Multiple Sclerosis Society. Maybe those offices can offer you some assistance. Good luck

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      #3
      I am trying make some sense of your post and you stated that you have RMMS. The correct term is 'RRMS' , which stands for Relapsing Remitting Multiple Sclerosis. And if a neurologist made the diagnosis, he would, most certainly, have suggested that you begin on a DMD. I am wondering if this diagnosis was made by a qualified neurologist or who? I don't want to add to your stress, but your post is not quite clear as to why you believe you are 'blacklisted'. There has to be someone that can help you. Good luck

      Comment

        #4
        Originally posted by JerryD View Post
        I wish that I could offer some help ! Your post is heartbreaking ! I think that you need legal help . Try getting in touch with your county's social work department. You could also make contact with the local office of the National Multiple Sclerosis Society. Maybe those offices can offer you some assistance. Good luck
        Yes; good suggestions.

        Also, you say you were blacklisted by your neuro. Do you have a primary care physician? If you do, perhaps that could be a source of a referral to a different neurologist. With a referral from a doctor, you may be more likely to be accepted as a patient with a new doctor. Or, as suggested above, if you contact your county's social work department (would that be public health, or someone at your state's Department or Children and Families (DCF)?), maybe, in addition to suggesting some neurologists, they could provide a referral.

        Best wishes in your search for medical care.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08        .
        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment

          #5
          If you can't afford a PCP, go to the legal aid society in your area. You need an attorney. They provide services for free. They can get your records which is what you need to do to get in with another neurologist. Like others said, contact your local National MS society and get them to help you find an MS specialist in your area. Go to one in a metropolitan hospital or teaching hospital like if you live in Buffalo or somewhere go to their teaching hospital. Apply for charity care to cover your bills. This new neurologist can look at you with a fresh set of eyes and decide with you what medication to put you on for your MS. You have to take care of yourself first before you can care for your child. Try these things and see how far you get. With an attorney you should get right through it.

          Take care
          Lisa
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment

            #6
            Hi nobodyspecial,

            I am sorry for what you seem to be going through However, your story is confusing and doesn't make sense...to me.

            You did make a previous thread which might be helpful to others:
            http://www.msworld.org/forum/showthr...r-fired-me-NYS

            Take care.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment

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