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Sensory Ganglinopathy

Posted , 2 users are following.

marie31105
marie31105

Hello all

I've just joined this group and was wondering if anyone on here has this condition. I was getting IVig treatment for it until two months ago and it has been stopped apparently there is a shortage of immunoglobulin(it was apparently world wide and now supposedly just Scotland). It has been the only thing that has worked for me as have been tried on all kinds of oral medication over the years. They are now running out of things to try me on last call I think is Lamotrigine I am interested to hear if anyone has the condition and what  treatment they are receiving. Thanks

Marie xx

0 likes, 3 replies

3 Replies

  • Guest
    Guest marie31105

    Posted

    Sorry Maria I have never heard of it. I hope some of the other members can

    Chris 

    • marie31105
      marie31105 Guest

      Posted

      Thanks Chris for taking the time to reply x

      Marie 

    • Guest
      Guest marie31105

      Posted

      I wish you well. Please keep in touch it’s a lonely place when you are ill.

      Chris 

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