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  1. Julie

    You know what. I don't think personally they have a clue what you have and are just hanging labels whilst they scratch their heads… Just go with what you feel yourself. I think you have got better. Yes if you google stuff it's a complete minefield. Yes you are one in s million because you are you. I think that eventually your feelings will return bit by bit. After the course of steroids see how you feel. Then look in a different direction. But…. Don't give up hope. Xxxxxx

  2. Lisa__Deller

    Thank you for sharing. I'd not heard of either condition before, so it was very interesting, but my favourite part of the post is your final sentence. Whatever, the future may hold, may you always hold on to that sentence #MMBC x

  3. debsrandomwritings

    Hi Anne, I don't know what to say. You sounds positive in your post, but I have no doubt it's hard. As you pointed out it is in your favour that you have been diagnosed with SPS, although I bet you'd rather not have had the diagnosis. And if the electrical test on your muscles and nerves was the same as the one they did on my son that is really not nice (they stuck needles into his legs and ran electrical currents through them), it has to be the worst test he has ever had to go through.

    I hope the steroids treatment you are having this week works for you and that your symptoms don't get any worse.

    Take care and big hugs.

    xx

  4. raisiebay

    Yes, deb it was the needles with electrical currents, had them in my legs back and arms, but I only felt them in my arms so it wasn't too bad for me. I'm hoping the steroids have some effect too, they seemed to help a little last time I had them. Thanks for your kind comments xx

  5. differentiationiseasy

    Sending love, I hope your new treatment helps with your condition and eases your pain. I often think the not knowing is the scariest part of any condition, and should confess to being an avid googler. Even when we know we shouldn't (in fact perhaps especially when we know we shouldn't) the temptation is too strong. Thank you so much for continuing to share your story with us at #PostsFromTheHeart it needs to read so others understand they are not alone.

  6. imummyblog

    I have never heard of SPS before. Thank you so much for sharing your experience. I really hope that your symptoms don't worsen. Lots of luck with your treatment. #postsfromtheheart

  7. mummyemblog

    I've never heard of either condition before.

    You sound so upbeat and positive which is always s good thing x

  8. Ordinary Hopes

    That must have been scary to learn but so good to know that there are good treatments. Wishing you all the best.x

  9. John Gatesby

    This is the main problem with autonomic disorders. Very difficult to diagnose, no two cases are similar, so one must consult an absolute expert in the field, taking note of the symptoms and triggers is vital to get the best diagnosis and effective treatment.

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