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DM2 or Promm

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  • April 24, 2013 at 8:21 pm #74819
    DM2 or Promm

    Hi I’ve been diagnosed with dm2, myotonic dystrophy type 2 or proximal myotonic myopathy.
    Apart from getting used to all the different names they have for this condition I am slowly getting used to the idea of not being active. I have suffered weakness for years in my hips thighs and shoulders back etc but never knew what it was, when i finally went to the doctor i was really struggling to work.
    It is now 2 years later, finally got the genetic test done and have a diagnosis.
    I no longer work, I am 47 now, have great problems with stairs, I can still walk with pain, but have been refused all benefits,
    I get housing benefit which pays 70% of my rent, but am currently surviving by selling posessions on ebay.
    Obviously this cannot continue. They say I’m not elligible for dla, and my appeal for esa is taking forever. Is there any other help out there that I have overlooked?

    xntric
    Participant
    Posts: 6
    Joined: 24/04/2013
    April 25, 2013 at 12:54 pm #88471
    Re: DM2 or Promm

    xntric .. may I suggest you contact our Advocacy Team their email and phone number can be found HERE immediately. They are MD’s experts with all kinds of benefits and assistance in fighting for those benefits with the added bonus of MD knowledge.

    It might be that the way you answered questions on the forms is not specific enough to help the assessor [who you have to think knows nothing about anything] clearly understand your limitations.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    April 25, 2013 at 2:12 pm #88472
    Re: DM2 or Promm

    Thanks AMG, I’ll certainly give them a try.

    xntric
    Participant
    Posts: 6
    Joined: 24/04/2013
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