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Thread: Stiff Person Check In

  1. #161
    Distinguished Community Member Sunshine's Avatar
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    Infusion went well. Took Ativan at 8 am and at 130 a.m.

    At 4 phd my foot was smapsiming but not overwhelming.

    Discharged to DH. In te aback of th car, I seethed out and asked him to insert the 1.2 mm Valium in the recipe.

    So far so good.

  2. #162
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    After IVIG ankle spasm— tried a few maneuvers. worked find. The rec discharge and she if nay owrlse with the atest efface.

  3. #163
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    As I left the IVIG building, I had a terrific ankle twist spasm. Even though had Ativan at 1:30 pm that day for the IVIG, and had it also at 8am. It settled down in a few minutes. Got into car with DH and it greatly worsened. Did Rectal Valium gel and it stopped it.

    Then, this morning,had a bad spasm at @2am, unable to walk. settled down in 5 minutes. Then at 5 am very aggressive left leg spasm: unable to walk...Took Ativan. It worked in 20 minutes.

    I have put email out to doc about this morning. Had already told him about yesterday. I am thinking it was payback for forgetting my 2:30am 30mg Baclofen dose early yesterday morning...still could be...Yestrday before these crippling spasms, He Had told me to stay the course, and not take the missed dose...

    Scared. No drive today, no swim today, just lay low until I have a path. He gets back pretty fast to me.

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  5. #164
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    I hope that today is better, Sunshine.

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

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  7. #165
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    Thanks ANN.

    I swam 1/4 mile in 15 minutes. Still don’ttrust Legs after those massive spasms Mon-Tues.

    My legs still do not feel right since those IVIG spasms that night. They are tight, painful.

  8. #166
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    Getting ready for hurricane season. Will have to be sure to have a couple weeks worth at least, of all meds.

    Starting to stockpile food sources. Have a hotplate, toaster oven, rice maker, water heater maker to plug into generator with loss of power.

    Its overwhelming. What used to be done in my sleep is cognitively and physically overwhelming.

  9. #167
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    Urologist sent the urine out for culture. In the meantime will start a nightly Macrodantin. When culture comes back, if its positive, will stop Macro and sub in the UTI antibx and when that is finished, back t nightly Macro.
    Then he said that I have two serious neurological disorders. First time a doc told me SPS is serious, rather than, “never heard of it”.
    He said that large numbers of neuro patients have neurogenic bladder, i.e. incorrect nerve signals to bladder and result in these partially empty bladders that expand (mine is huge), and can back up to kidneys causing serious problems.
    As such, he rec doing a urological urodynamic study. They fill the bladder from the urethra and also place tiny electrodes on the bladder wall or something like that, or maybe the urethra. They then can measure the nerve impulses going to the bladder.
    He said it waould be impossible that my opened stricture has closed that quickly and so he doesnt think that is the source of the problem anymore.
    If its neurogenic he said I would have to self cath.
    That was scary to hear. Very scary. I know others here have done that.
    He said it wouldn’t hurt to do it because you can relax the urethra so that the cath easily inserts since you are doing it to yourself. Seems like a great way to get a massive infection.
    What do you know?
    I have the test in 4 weeks.

  10. #168
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    Today I successfully drove 30 minutes and back to get my annual mammogram and bone density. People are so kind and helpful to me. This is the first time I couldnt stand for the mammo. Last year I was able to stand long enough for it.

    The bone tech said that Swimming is good for bones becaus of the water resistance despite weightlessness...

  11. #169
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    I have a UTI and am starting Levaquin in 30 minutes. If history repeats itself, I should be walking better within days, less spasming, less spasticity...hoping it helps, hoping it is not an antibiotic resistant bacteria.

  12. #170
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    Yesterday I took Ativan at 8 am, 1pm and 3 pm. Zero spasticity. zero pain, Zero back issues. All the way through the night until I woke up. It was glorious...felt so well I was thinking about usual old me stuff like surfing, dancing , laughing with people.

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