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  1. Bear and Cardigan

    Oh dear it's always good to have a diagnosis, a name to hang your symptoms on but that is not so good when it is obviously something rare. I've never heard of the condition but it must be a worry. I hope you find a group but stay in your other groups. The name may be different but it appears the symptoms are similar and it's always good to chat with those in a similar position. If you ever need a chat with someone detached, albeit someone who has no idea what you are going through, please feel free to contact me. Hugs to you. Xx Sally

  2. Northumberland Mam

    Oh gosh! No wonder you are confused….You've been dealing and coming to terms with one condition and it turns out it's something else….I hope you manage to find some support and the treatment helps. Sending love and hugs x

  3. Reading Residence

    This is very confusing, and it must be frustrating to find so little info about it either. Having come to terms with your previous diagnosis and connected with other sufferers it must be so difficult to be told it's not that at all but something entirely different. I hope the treatment makes a difference and you can find a support group soon x Thanks for sharing with #WotW

  4. Dean B

    Oh dear, I can imagine how difficult a new diagnosis must be for you, so sorry to hear that. Hopefully things will somehow get better. #wotw

  5. karenblower

    Oh wow.. now that would knock the proverbial stuffing out of you.. I hope you can find some support somewhere. There is a Twitter account @rarediseaseuk I don't know if you've contacted them, they might know of organisations that can help you? take care x

  6. angiemwebster77

    I'm not surprised you are confused Anne. Coming to terms with your illness for over a year then finding out that's not what you have must have knocked you for six. I really hope the new treatment will help you. Take care x #WotW

  7. mummyhereandthere

    That must be hard to deal with the change, fingers crossed that this is revelation is a step forward for you X #wotw

  8. liquoriceuk

    It must be so hard to have to come to terms with one diagnosis and then have it overturned and to have to start again with a new one. I hope the new treatment will work well for you. #WotW

  9. mummyshire

    Cricky, it must be so tough not knowing what you're dealing with, no wonder you're confused. I do hope that you get more clarity and certainty soon, then at least you'll know what the problem is. No knowing must be the most difficult part
    #WoTW

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