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Sheri
Sheri
Senior Member
Last Activity: 31 Jul 2021, 4:08 PM
Joined: 10 Aug 2016
Location: CT
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  • Sheri
    replied to New Member Here
    in Life
    Welcome! This group has provided a wealth of information. I saw you may be getting into a study. I’m in a gut microbiome one for potentially cessation of MS and/or remyelination. Best to you!
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  • So psyched for you! Good luck!
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  • I have gotten multiple cord lesions over 26 years which have been called both “transverse myelitis of unknown origin “ as well as possible MS. Rule of thumb w vaccines generally for people who may have an immune system disease has been to avoid live, attenuated virus vaccines (such as flu mist)....
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  • Sheri
    replied to What meds?
    in Pain
    Having found no relief, I’ve settled on compounded low dose naltrexone (LDN) 4.5mg. I’ve been wondering a lot lately whether it actually does anything tho I recall when I started four years ago being convinced that it did. It supposedly steps up production of our endorphins. I know I went from not...
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  • Sheri
    replied to Need baclofen pump bolus tips
    in Care
    Makes sense. I’m never in anything above body temp. I exercise in 85-88 degree water but there’s a therapy pool available that runs 92-93. Uncomfortably warm for MS but I considered it when I thought that the coolness of my normal pool was my excess spasticity trigger. When I still got a spasticity...
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  • Sheri
    replied to Need baclofen pump bolus tips
    in Care
    THAT is good to know! So if I venture into a very warm therapy pool, I’ll be inadvertently bolusing!

    For anyone who keeps their program steady all day then boluses for overnight, how and when do you do it? Basically, how long until it kicks in and when is it gone?
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  • I have pretty hefty neuropathic pain and have a Medtronic Baclofen pump containing Baclofen only. I have multiple cord lesions due to MS. When you guys refer to pain, is it neuropathic or something other, such as joint-related from your injury? Has anyone put anything in their pump that has helped neuro...
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  • Sheri
    started a topic Need baclofen pump bolus tips
    in Care

    Need baclofen pump bolus tips

    I worked really hard to get my pump pre programmed at different levels throughout the day to sync with my daily fluctuations. It was admittedly interesting to experiment with different lag times vs different levels of Baclofen but it took many trips to the doc over many months to get it just right and...
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  • Sheri
    replied to ADI transfer boards
    I like this guys board too but it doesn’t have the grippers. Nicely slick and tapered
    https://www.rehabmart.com/product/re...rds-42029.html
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  • Sheri
    replied to SCI tips for getting acclimated to A/C office?
    in Life
    I’ve been in a similar situation tho my vent wasn’t as big as yours. Why can’t you divert or block it? I’ve purchased angled plastic diverters that stick to the vent w side magnets and re route the airflow away from me. I recently purchased and love this vent cover which is actually a better...
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  • Sheri
    replied to Moved: CBD discussion
    in Pain
    For what it’s worth, my kid is wrapping up a neuroscience PhD and runs across lots of cool tidbits that she shares with Mom. Recently she’s become very excited about medicine in general being customized to the individual. She explained that a given condition isn’t a “thing” but simply an umbrella...
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  • Sheri
    replied to Psyllium husk powder dosage
    in Care
    Sugar is inflammatory and empty calories so I’ll enjoy it deliberately in a treat but try to avoid it where I can.

    And, yup, BP = bowel program in my above post.
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