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Thread: Stiff Person Check In

  1. #141
    Distinguished Community Member Sunshine's Avatar
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    This afternoon I took Ativan. My legs were so awful, i could barely walk and the pain was intense. I felt defeated. DH was off work today, and he suggested Ativan.

    So I took it 4 hours ago and have had a good day with it! I am mostly walking or using rollator. No need for th R2D2. And I am standing for a while while I cook. The downside is it makes me drowsy.But that is still way better...

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  3. #142
    Distinguished Community Member Sunshine's Avatar
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    Visit with neuro went well. Brain MRI in June scheduled to look for new active MS lesions. He saw the cognitive deficits I was describing. Its pretty. Obvious. He thinks its the muscle relaxants.

    Restarting chiropractor per neuro rec. Urogram showed extrusive disc pressing on nerve root. His physical exam confirms some loss of function from it. If sudden symptoms he described, he will then send me to the neurosurgeon. thinks we can avoid that.

    Still no call back from Urologist about the Microgen result of Cystoscopy re chronic UTIs.

  4. #143
    Distinguished Community Member Sunshine's Avatar
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    IVIG went well. I take two consecutive Ativan for it to prevent spasms. Lease me woozy but completely pain free. hat a blessing to have zero, zero pain for hours at a time. Still am pain free at home, Too bad the dizzy is part of the equation. Was able to do stuf at homewithout the w;c and thus not overwhelmed by al the stuff I tackled.

    I got a try a surf day with it.

  5. #144
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    For some reason,I got logged out of BT...hm... Back in now.

    I will be meeting with VNA soon to see what services, if any, I need at this time that they deliver to people. Will report in once the appt time is established.

    Today will take Ativan, a powerful SPS muscle relaxant, and will go out for a nice lunch, and maybe to a store to shop for linens that are hard to get on line since you canít feel the sheets and towels on line...DH will take me with R2D2.

    Struggling with SPS and extrusion of L5 disc.

  6. #145
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    I will be having a Cystoscopy under anesthesia to rule out Interstitial Cystitis in a few weeks. I dread the whole Baclofen Tizanidine issue . Meeting with pre op ARNP in a few days to discuss how to manage the NPO thing with needing to take 5 pills at 1:30 am and one pill at 6 am. Sure hope i dont go into an SPS crisis.

    Comcast was completely out in our area for 4 hours. No phones, no internet, no cells, no tv. For some reason, email worked.

    Its scary to have no reliable way to connect to emergency help...Only 1 bar on cell because live rural and need network extender which depends on Comcast WiFi.

    Will bring my info from Thetinman.org on anesthesia and SPS to the pre op appointment in a few days.

  7. #146
    Distinguished Community Member Sunshine's Avatar
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    Today I took an Ativan to get a break from SPS. Ativan helps me about 6 hours.

    On the med, I had to stiffening and no pain. I walked easily and almost normally, accomplished a lot of house sprucing up, was able to got to Home Depot with DH, cook a nice meal, get the plants up and running I bought from HD>

    The muscle grabbing I had thought was due to disc extrusion is only partly that. THe worse symptoms were gone. Non of the symptoms required wear my back brace. I could tell the disc extrusion but Ativan made it more tolerable
    Zero electric shocks down the the calf on Ativan. ALmost no spasticity from the chiro issue.

    Bladder is acting normally on Ativan. WOndring if the pain is bladder muscles spasming.

    Love Ativan. WishI could take it all day

  8. #147
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    IVIG all day tomorrow. See you Thursday...

  9. #148
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    I started wearing my Lifeline alert button pendant yesterday. I will be putting the Vial of Life in my fridge. I have the lockbox on the front door so that EMT can enter the house without busting down the door (GEESH)...Trying hard to be smart , anticipating a fall could render me unconscious, or break leg in fall with no way to get help.

  10. #149
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    Today I just collapsed onto the couch around after breakfast. I am so tired of bladder pain, feeling like Iam on a boat in a storm , feeling shaky inside, feeling like its hard to talk, much less participate in conversation, having so many cog and physical symptoms. I just looked at my DH, while I lay on the couch and said, ďI just canít do this anymoreĒ and I sobbed. He was so sweet, put his arm around me, lie down next to me, didnít try to coach me or talk me out of my feelings, just let me sob and talk...

    Seems like we all go through this with these diseasesó- I recalla friend going through this in the thick of cancer treatment.

  11. #150
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    Today I see the GI guy for a follow up for swallowing problems, for Baclofen induced constipation. Its 25 minutes away, and a slog to the front door of a huge carpeted building. Which means rolling their bariatric wheelchair on rug. Hope a kind soul can help out.

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