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Thread: Stiff Person Check In

  1. #181
    Distinguished Community Member Sunshine's Avatar
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    Yesterday saw improvement in walking. I spent much more time on the rollator and less on the wheelchair— a blessing! Hoping for this improvement to maintain itself...don’t know why , but I will take it :)

    Today is the urology consult on the Urodynamic study results and recommendations. So tired of these doc appointments and begging rides and leaning on spouse and friends...who do it without complaint...

    Yesterday a new friend took me to the GI consult (GI problems caused by muscle relaxants), and that was so kind and generous of her...Lucky I am now at an age where many friends are retired...

  2. #182
    Distinguished Community Member Sunshine's Avatar
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    Trying a med Rxd by Urologist to improve muscle coordination of the bladder. But it has side effects of headache and sinus stuffiness—not fair...

  3. #183
    Distinguished Community Member Sunshine's Avatar
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    My youngest is visiting this weekend. Will take an Ativan soon so I can enjoy the visit more, since it helps with walking and stiffening.

    So sad that SPS impacts my family so hard. To know how painful it must be for my loved ones to witness my decline breaks my heart.

  4. #184
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    So, I did Ativan for two days in a row, and life was so much better on it with respect to walking and pain. Did not have to use MMJ at all, barely used the wheelchair, only used the Rollator to catch me just in case I spasmed while walking.

    I will be off Ativan for child’s last visit today. Because doc said only use it 3 or 4 times per week, and I want to save it in case i have a spasm this week...Neuro says that using it mor than that can lead to tolerance, i.e. lose its effectiveness and makes it hard to taper it down as it is addictive to the body....

    Perhaps this is why SPS patients often find their Valium loses effectiveness over time
    Last edited by Sunshine; 07-07-2019 at 02:22 AM.

  5. #185
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    Poor walking today, mostly in wheelchair. Might be because I messed up and took my 30mg Baclofen and 8 mg Tizanidine at 10:22 pm instead of 12:30am. ...hope it will resolve by tomorrow...

  6. #186
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    Today the hospital called: They have an infusion med. I will do it at the hospital Thursday. My sister who was coincidentally flying down Wednesday night, will come with me , drive me, etc since DH only has WEdnesdays off. I was kind of starting to look forward to a home based one! But this will put $800 back into my pocket. I will treat sister :)

    The secretary said, “This is a one time appointment”,meaning they don’t have a reliable source yet. So home might still be in the future.

  7. #187
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    Two brief spasms in left ankle and foot at 3:45am and 4:10am today— first spasms in weeks. IVIG is Thursday at the hospital. Hoping it halts this trend...

  8. #188

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    my name is pat I also have sps and just finding post of sps it would be nice to talk with someone that understands

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  10. #189
    Distinguished Community Member Sunshine's Avatar
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    Hey there Pat. I sure do understand. If you feel comfortable, tell me more about your challenges etc.

    Today I am in IVIG for 8 hours, so I won’t be able to respond until the end of the day, or if knocked out, tomorrow. But I hear you :)

    This is a beastly disease, and if it were on a sci fi show, viewers would say, “Thats an impossible disease. No one would believe that its real”

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