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  1. View Post

    Cat’s home!
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    So, I tried to reduce Baclofen to 80mg daily from...

    So, I tried to reduce Baclofen to 80mg daily from 85mg and all day the legs were stiffened yesterday....I don’t know if its affiliated with the reduction of Baclofen. I liked the less side effects,...
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    So, I tried to reduce Baclofen to 80mg daily from...

    So, I tried to reduce Baclofen to 80mg daily from 85mg and all day the legs were stiffened. I don’t know if its affiliated with the reduction of Baclofen. I liked the less side effects, not dizzy,...
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    Those are terrific prices agate! So sad to see...

    Those are terrific prices agate! So sad to see the pig feet. Having had two pet backyard pigs on my backyard “farm” with goats and chickens, I can tell you they are sentient and intelligent...
  5. What a wonderful story Laz! Thank you so much for...

    What a wonderful story Laz! Thank you so much for sharing it with us. ... memorable :)
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    Today I swam 22 minutes 720 yards on a reduced...

    Today I swam 22 minutes 720 yards on a reduced Dose of Baclofen to 80mg daily...
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    Agate, you are getting stronger and stronger. But...

    Agate, you are getting stronger and stronger. But Ladders? Even well people fall off of them as they age....

    Bravo for your determination.

    Today I swam 22 minutes 720 yards on a reduced Dose of...
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    I swam 746 yards in 21 minutes, then got...

    I swam 746 yards in 21 minutes, then got groceries.

    SPS seems to be worsening...
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    Swam 746 yards in 21 minutes, groceries, resting.

    Swam 746 yards in 21 minutes, groceries, resting.
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    View Post

    Adorable picture of Tula Nuthatch :)

    Virginia— I wouldn’t want to do that either. However, for different reasons.

    But to tell yourself you would have to shop to update your look etc, is to put...
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    The OTC CBD is from the hemp plant and thus legal...

    The OTC CBD is from the hemp plant and thus legal across America. It has trace THC in it, negligible. If he buys the Cannabis CBD tell him to get the highest CBD to THC ratio. From the company...
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    View Post

    I like them a lot. I should’ve put them every where, not just the bathrooms, so if i tripped I could grab them. Or to pull self in the wheelchair faster

    I got the pinged smaller diameter: they...
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    Last night I cut back Baclofen by 5mg per doctors...

    Last night I cut back Baclofen by 5mg per doctors encouragement, to see if spasms still under control and side effects lessen. So I cut 2 min off swim today.
    I swam 22 minutes 703 yards. So far so...
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    Last night I cut back Baclofen by 5mg per doctors...

    Last night I cut back Baclofen by 5mg per doctors encouragement, to see if spasms still under control and side effects lessen. So I cut 2 min off swim today.
    I swam 22 minutes 703 yards. So far so...
  15. Thread: Politics

    by Sunshine
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    242,693

    SHS will go down in history as a sycophant and...

    SHS will go down in history as a sycophant and enabler. She has sold her soul to the devil for her moment of fame. Such a shame.

    Like so many of Trumps associates, she has sullied her prior good...
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    Check out the MMJ thread I started a while back....

    Check out the MMJ thread I started a while back.
    Most CBD is from the hemp plant and is unregulated: you dont know what’s in it. And, in general is less effective than the Cannibis plant CBD, as it...
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    Jeanie, you are making so much progress. ......

    Jeanie, you are making so much progress. ...
    Allay my fears: This year you will batten down the hatches with Andy if a hurricane approaches, right Jeanie?
    You have such grit.
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    View Post

    It’s terrific, very liveable :) and beautiful
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    https://www.ksat.com/news/new-therapy-working-for-...

    https://www.ksat.com/news/new-therapy-working-for-safd-firefighter-battling-rare-stiff-person-syndrome
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    2 sec light spasm lateral leg 3 am Swam 22...

    2 sec light spasm lateral leg 3 am
    Swam 22 minutes, 800 yards.
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    Swam 800 yards in 22 minutes. DId fine..

    Swam 800 yards in 22 minutes. DId fine..
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    Terrific Jeanie! Are you able to do the routine...

    Terrific Jeanie!
    Are you able to do the routine without them present?
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    IVIG went well. No spasms. The 3 ativans also got...

    IVIG went well. No spasms. The 3 ativans also got rid of all my pain and I walked nearly normally.

    Today, the day after IVIG I am still walking better,walk 60 steps without dying to sit down.after...
  24. Thread: Politics

    by Sunshine
    Replies
    2,617
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    242,693

    What he is doing is treasonous. If a dem pres did...

    What he is doing is treasonous. If a dem pres did this, the Republicans would be initiating impeachment proceedings. and, I hope at least, enough Dems would go on board to facilitate it.
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    Start where you are. Right now, start with the...

    Start where you are.
    Right now, start with the breathing. Get the anxiety piece under control. Here is a meditation I want you to try by Tara Brach. It is a 4 min meditation. Get something you can...
  26. Thread: Bird Watching

    by Sunshine
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    Surfing did that (does that) for me when I was...

    Surfing did that (does that) for me when I was well. Time dilated, and I could notice every detail and nuance at the beach and in the water. The spray of water over my friends head, the bird,...
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    IVIG went well. No spasms.

    IVIG went well. No spasms.
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    IVIG all day today...\ Back now from an...

    IVIG all day today...\

    Back now from an uneventful day. Happy to say I am walking better, no pain, no pain in back or in legs, no arm pain. I do have 3 ativans in me starting at 8 am, 1pm and 3...
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    IVIG all day today.

    IVIG all day today.
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    No see ums dont leave any itchy bumps. Or at...

    No see ums dont leave any itchy bumps. Or at least the ones that hound my surfing crew. They are miserable because they hound you and swarm you though!
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    ThnK YOU ROSE! Jeanie, Rose eloquently stated...

    ThnK YOU ROSE!

    Jeanie, Rose eloquently stated my position in a way that is a good road map for you. If you don’t have the energy to follow it, please show it to Andy and get his help on board.
    ...
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    Call your PCP and tell them your dilemma and will...

    Call your PCP and tell them your dilemma and will they order the PT as you are going backwards in your healing
  33. Replies
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    Today I swam 22 minutes, 800 yards. Stopped, as I...

    Today I swam 22 minutes, 800 yards. Stopped, as I had planned to do yesterday after the 1/2 mile extended swim.
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    Today I swam 22 minutes, 800 yards. Stopped, as I...

    Today I swam 22 minutes, 800 yards. Stopped, as I had planned to do yesterday after the 1/2 mile extended swim.
  35. Thread: Bad fall

    by Sunshine
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    Sounds like a fracture. I would go to urgent care...

    Sounds like a fracture. I would go to urgent care to get the immediate referral for an X-ray. Or call the PCP and ask the nurse to get a referral for X-ray today. Always insist— you know your body,...
  36. Thread: Bird Watching

    by Sunshine
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    3,331

    The cool, silver in the lining in the cloud thing...

    The cool, silver in the lining in the cloud thing is that , at least for me, we are impaired enough to notice things in nature and in the civilized part of life, that we overlooked when we were more...
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    To add onto my previous post,there is also a...

    To add onto my previous post,there is also a spray that claims to repel no see ums (a homeopathic spray) I got either on line or at my surf shop. If I find it today, I will post it. It doesnt work as...
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    Case report of misdiagnosis of Stiff Person...

    Case report of misdiagnosis of Stiff Person Syndrome that was unresponsive to Baclofen and Benzodiazepines

    https://jamanetwork.com/journals/jamaneurology/article-abstract/2732173
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    This morning I swam 1/2 mile in 25 minutes. I...

    This morning I swam 1/2 mile in 25 minutes. I think I will stop by 24 minutes for now on.
    Last night I had 2 ankle spasms around 3am.Bummer.

    Doc visit and grocery shopping after the swim. Then...
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    Yes, insist on an appointment this week. Tell...

    Yes, insist on an appointment this week. Tell secretary you are rapidly worsening. Good luck. Clear those what if thought out, theyre likely not true, but will exacerbate everything inside of you.
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    WHen there are no see ums at the beach its...

    WHen there are no see ums at the beach its usually when there is no wind. I found that as soon as I hosed down in the shower, they left me alone. If its hot, in NC, you might hose down and see if it...
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    This morning I swam 1/2 mile in 25 minutes. I...

    This morning I swam 1/2 mile in 25 minutes. I think I will stop by 24 minutes for now on.
    Last night I had 2 ankle spasms around 3am.Bummer.

    Doc visit and grocery shopping after the swim. Then...
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    https://www.fool.com/investing/2019/...e-recreat.a...

    https://www.fool.com/investing/2019/...e-recreat.aspx

    The article delineates the MMJ industry and number of states legalizing it and the burgeoning recreational MJ, and states about to vote to...
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    https://www.fool.com/investing/2019/06/09/after-il...

    https://www.fool.com/investing/2019/06/09/after-illinois-these-states-could-legalize-recreat.aspx

    The article delineates the MMJ industry and number of states legalizing it and the burgeoning...
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    Today I swam 862 yards in 24 minutes. Last night...

    Today I swam 862 yards in 24 minutes. Last night I had an ankle spasm at 3 am lasted 10 seconds, fired up again a moment later for 10 seconds. Settled down...
    Yesterday I took Ativan to get a break...
  46. Replies
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    Today I swam 862 yards in 24 minutes. Last night...

    Today I swam 862 yards in 24 minutes. Last night I had an ankle spasm at 3 am lasted 10 seconds, fired up again a moment later for 10 seconds. Settled down...
    Yesterday I took Ativan to get a break...
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    When the flavor is not there, I think some eat...

    When the flavor is not there, I think some eat more of them, trying to get flavor from it.
    Lately my bananas are a good texture as always, but have zip flavor in them.
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    Agate, what was the setting you changed? Howie...

    Agate, what was the setting you changed?

    Howie and Virginia, I am sorry you are feeling a little low this past week. Is it the heat flaring your symptoms up, or does it seem like a flare unrelated...
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    I swam 800 yards today, went to produce stand and...

    I swam 800 yards today, went to produce stand and put the food away. Rested a bit, took Ativan at 10:00 am and then enjoyed a respite from SPS symptoms, the only think I still have is the side...
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    I took an Ativan, planned today at 10am so as to...

    I took an Ativan, planned today at 10am so as to get a break from the stiffening pain. It is so helpful.I am moving better, no need for R2D2, using rollator for safety only. Was able to cook a meal...
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    Cheryl and agate are ageing their paper juggling,...

    Cheryl and agate are ageing their paper juggling, both a pain in the neck to prepare, but necessary to meet their end goal. Good going !

    I took an Ativan, planned today at 10am so as to get a...
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    I am same way virginia. Today swam 800 yards...

    I am same way virginia.

    Today swam 800 yards 23 minutes, grocery store—walked @40 steps to cart, put groceries away. Resting
  53. View Post

    Hey Dagaz—welcome home :)
    Thank you for the heads up. I will ask my neuro about it. Glad to hear that you have been so very stable with your MS!
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    https://www.cureus.com/articles/20141-anti-glutama...

    https://www.cureus.com/articles/20141-anti-glutamate-dehydrogenase-antibody-positive-cerebellar-ataxia-and-stiff-person-syndrome-responding-to-dual-treatment-with-steroids-and-intravenous-immunoglobul...
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    No swim today: had to go to doc appointment...

    No swim today: had to go to doc appointment early...
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    Those are great numbers agate! No swim today...

    Those are great numbers agate!

    No swim today as I had an early MD appointment.
  57. Replies
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    I swam 800 yards in 23 minutes today. Then went...

    I swam 800 yards in 23 minutes today. Then went to the produce stand. Came home and got fruit ready for a friend who was visiting. An hour visit durned into 80 minutes. I gotta be better about only...
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    Thats a beautiful tribute to your friend...

    Thats a beautiful tribute to your friend Virginia.

    I swam 800 yards in 23 minutes today. Then went to the produce stand. Came home and got fruit ready for a friend who was visiting. An hour visit...
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    Sounds like you are doing the best you can...

    Sounds like you are doing the best you can Cherie. A wise person once said to me, “you eat an elephant one bite at a time”.
    And a B+ presentation is just fine, if you don’t have energy for your...
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    It may have felt like that, but from what I...

    It may have felt like that, but from what I heard, the audience would not have thought you sounded blotto etc!
  61. Latest threat looming on care for Stiff Person Syndrome

    https://www.painnewsnetwork.org/stories/2019/6/5/crackdown-on-rx-opioids-and-benzodiazepines-ignores-their-benefits

    SPS is mentioned in this article on the potential serious implications for SPS...
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    View Post

    That is great Jeanie— more progress :)
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    I am thinking lots of non MS people are low in...

    I am thinking lots of non MS people are low in Vitamin D, but that being low on D if you have MS has more apparent impact? Mark?
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    Hey Mark Its great to hear from you. You...

    Hey Mark
    Its great to hear from you. You certainly are living a storied life, and managing to live very well with the MS.

    I used to post under a different username...Changed my handle for various...
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    Oh Virginia, I am so sorry. Losing friends is so...

    Oh Virginia, I am so sorry. Losing friends is so hard.
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    Your cellphone call registryshows all calls that...

    Your cellphone call registryshows all calls that came in and went out. Is he incoming call the same as the one shown on your landline?
  67. Replies
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    Today I swam 773 yards in 23 minutes. I have been...

    Today I swam 773 yards in 23 minutes. I have been swimming despite the stiffening in my feet while I swim, and the lower back pain. So far, so good.

    I am so tired of the pain in the stiffening...
  68. Replies
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    Today I swam 773 yards in 23 minutes. I have been...

    Today I swam 773 yards in 23 minutes. I have been swimming despite the stiffening in my feet while I swim, and the lower back pain. So far, so good.
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    thanks Cherie, i just listened to your very...

    thanks Cherie, i just listened to your very effective presentation— you seem to have the cognitive skills and a voice of a much younger woman!!! The info was valuable. Am especially interested in...
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    Beautiful photo nuthatch. ANN, I was up as...

    Beautiful photo nuthatch.

    ANN, I was up as usual, but just feel kind of weak, was lying down after my swim and grocery shop. Back now. Sorta. So tired of these meds and illness....

    Cherie,...
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    You can always refuse the 1.5T in the ER if thats...

    You can always refuse the 1.5T in the ER if thats what they choose.

    For longer term, are ou able to get off of the HMO and onto a PPO?
    My friend was on an HMO and she got off it onto a PPO when...
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    Brain MRI was today and I was pleased that my...

    Brain MRI was today and I was pleased that my legs didnt spasm. They reported in and I just told the muscles to settle down...they listened to me for some reason or other.

    The techs were great...
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    Thats fantastic Jeanie!!! Well done!!!

    Thats fantastic Jeanie!!! Well done!!!
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    Perfect. Sunday is only 6 days away. But i...

    Perfect. Sunday is only 6 days away.

    But i read in your other thread about new sever head pain. Sounds like ER should be done now. And let them know, if they say MRI, that you Insist on the 3T as...
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    I see that Ellura has been endorsed last month by...

    I see that Ellura has been endorsed last month by the American Urological Association as a prophylactic.
    Comforting. I had started it yesterday.

    Keep that doctor Agate.

    Did the brain MRI today...
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