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Thread: Stiff Person Check In

  1. #31
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    Just finished my infusion and had to back off the rate to 50, had horrible chills, shivering, leading to spasms but things have settled down. Rough day! Hoping it continues to help. This cold front is not helping.

    Sunshine, thabks for the information. I am already a member of the Facebook group. In fact I think that is where I saw the link to this forum.

    Sunshine I hope this round does well for you.

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  3. #32
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    That sounds rough KickingIt... I had that when they increased from 30 to 35 and it is no picnic indeed.

    I am interested in your cold front experience. I too have noticed I do better when it’s not cold.( Which is puzzling as I do worse with MS symptoms in the heat)

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  5. #33
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    This was a day of plenty of stiffening. I don’t know why. The MMJ seems less effective than usual. The doc said that. OST people eventually develop resistance to it. So you have to stop cold turkey for two days, then slowly restart it, to give the cannibis receptors time to regenerate.

    I hope that’s not the case. It wouldn’t be fun to go back to severe neuropathy. Let’s see how it goes tomorrow.

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  7. #34
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    I hope that's not the case, Sunshine, 2 days is a long time.

    ANN
    There comes a time when silence is betrayal.- MLK

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  9. #35
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    It was only that one day of MMJ problem. Yesterday and so far today are okay again.

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  11. #36
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    Everyday is a challenge with SPS for sure.
    I was thinking that it’s not just the burden of the disease, but also the side effects of the treatments. The high dose of muscle relaxers creates constant feeling of rocking, tiredness, wanting to lie down and do nada.

    The constant coaching of self to move, to do what’s doable and let go of the undone.

    The vigilance against becoming depressed with such a life limiting and altering disease and therapies. The loss of self due to the cognitive and emotional impairments affiliated with lack of GABA is a definite challenge.

    Who am I now?

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  13. #37
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    Finished another 8 hours of IVIG....

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  15. #38
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    Yesterday and today are after IVIG two days ago. Yesterday was my best leg day in a while. So far today is also good. Someone said my gait looked stronger.

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  17. #39
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    I read this article in WaPo on Repetitive Exercise Dystonia. It reminded me a bit of Stiff Person Syndrome, especially the rareness of it and, for many SPS patients, going from dr to dr to dr who want to write it off as psychological.

    https://www.washingtonpost.com/natio...ptimist&wpmm=1

  18. #40
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    http://www.lovelightandinsulin.ca/20...diagnosed.html

    Nice article about having a rare disease

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