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Type: Posts; User: Sheri

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    Without a PT assessment, you won't know EXACTLY...

    Without a PT assessment, you won't know EXACTLY which areas need more or less work so def try to maybe talk someone in doing a gratis evaluation. Otherwise, another thing I found were a few DVDs w...
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    Prior to getting out to the pool, I was home...

    Prior to getting out to the pool, I was home bound and in powerchair for most of a yr. I was able to do a little daily walking w a walker for the past several yrs for PT purposes only but not to...
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    Hi. I'm 22 yrs into progressive MS, on a scooter...

    Hi. I'm 22 yrs into progressive MS, on a scooter past 5 yrs. Have started aquatherapy and LOVE it. I take the senior and disabled bus and find that the WHOLE thing is great therapy. I yak w the...
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    I have MS. Used Avonex for three yrs in early...

    I have MS. Used Avonex for three yrs in early 2000s. No effect - just side effects. I'm waiting for non immunosuppressant drugs myself. Lots of autoimmune stuff in the works targeting gut microbiome,...
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    Hasn't worked for me, but supposedly low dose tri...

    Hasn't worked for me, but supposedly low dose tri cyclic antidepressants like amitryptoline. No antidepressant effect at low dose. Take before bed, supposedly help sleep then also full days central...
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    So, medtronycguy, did you ever try low dose...

    So, medtronycguy, did you ever try low dose amitryptoline or marijuana or cymbalta? I can totally relate to your frostbitten description! Spot on! Freezing and burning at once.
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    Having a pump is serious business so don't be...

    Having a pump is serious business so don't be forced into it. My physiatrist threatened NOT to do it unless he was convinced that I was bought into it. I very honestly said I hated the idea of...
  8. HOW did they make Magic Bullets EVEN HARDER to open???!!!

    I know you're all thinking it!
  9. I've had a hard time finding solid info re...

    I've had a hard time finding solid info re Pathmaker. Thought they'd have something going on in the US since they got some FDA fasttrack thing but all I can find is an announcement that they're...
  10. Now the link says it's not recruiting YET so who...

    Now the link says it's not recruiting YET so who knows when it might start. How does this compare to the Pathways one out of Boston that is starting a trial for their first device for spasticity in...
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    Tried three diff vape oils, two oral oils, 1 pill...

    Tried three diff vape oils, two oral oils, 1 pill for spasticity and/or pain. Nothing worked. For neuro pain, can try low dose amitryptoline, low dose naltrexone, cymbalta, or see other thread re...
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    So great to hear! I'm in a gut microbiome study...

    So great to hear! I'm in a gut microbiome study for MS and was amazed to learn that the gut microbiome of people w SCI is actually different from those without. Crazy! With a disease, I could see the...
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    Is baclofen pump refill painful?

    Trying to decide whether I can take the disabled bus or need husband to bring me for first pump refill. I'm a HUGE chicken and have slightly exaggerated pain sensation. Do I need pain med and/or TLC...
  14. Preach!

    Preach!
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    Myelin regeneration study can speed up

    https://multiplesclerosisnewstoday.com/2017/04/13/researchers-create-3d-structure-to-study-regeneration-of-nerve-coatings/
  16. FYI some research just came out re Ampyra so in...

    FYI some research just came out re Ampyra so in case it may be relevant to 4-AP:

    non responders can become responders over time and responders can likewise become non responders so drug holidays...
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    I actually started seeing a therapist. My...

    I actually started seeing a therapist. My therapist, neuro, physiatrist all think I'm prob not clinically depressed but then think I'd be good to augment the serotonin and maybe just get a little...
  18. Great news! There are so many promising avenues...

    Great news! There are so many promising avenues but they all need lots of funding and need to move FASTER
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    Busiprone (buspar), escitaopram or other ssri?

    Especially As I'm feeling quite nuts now, I'm going to start some sort of mental health med. Curious as to whether anyone has messed w any and found any augmentation to physical function as I'm all...
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    53 yrs old on a scooter, lots of etc, due to 22...

    53 yrs old on a scooter, lots of etc, due to 22 yrs of progressive MS. Some combo of regeneration, remylination, smooth efficient robotics will easily be here within ten, hopefully five yrs. I've...
  21. Thread: suicide

    by Sheri
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    121,779

    Side note: Denied2016 can have second act as a...

    Side note: Denied2016 can have second act as a writer
  22. Thread: suicide

    by Sheri
    Replies
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    121,779

    Lots of mixed feelings. Love Alan and Graybeard...

    Lots of mixed feelings. Love Alan and Graybeard above just poking at it. We all think it. Sometimes we laugh, sometimes we cry. Sometimes we get a good night's sleep and have a better day. I'm a big...
  23. Thread: Baclofen pump

    by Sheri
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    Not sure whether I should even post my truth. I...

    Not sure whether I should even post my truth. I hate my pump and am hoping for either a new drug or stim device that could replace it by the time the battery goes on it. I def agree it's for when...
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    Sticky: Forgive me if this was answered elsewhere, but...

    Forgive me if this was answered elsewhere, but are completes just the extreme starting point? Will this be trialed in incompletes and MS patients soon too?
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    Low profile or high profile Roho?

    Well the hospital GAVE ME a pressure sore when I got my baclofen pump. Never had one before. Time for a Roho. My PT is concerned about instability and wants low profile so I don't sit on base of back...
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