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  1. Replies
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    Neuro messaged me last night (man he works late)...

    Neuro messaged me last night (man he works late) and said it would be IV at home, not subcutaneous infusion. I guess that means an RN would be here all day?

    And, how could it be that a home health...
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    https://melodyreports.com/immunoglobulins-market-i...

    https://melodyreports.com/immunoglobulins-market-is-expected-to-clock-a-notable-7-2-cagr-during-2018-2026/2931/
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    https://melodyreports.com/immunoglobulins-market-i...

    https://melodyreports.com/immunoglobulins-market-is-expected-to-clock-a-notable-7-2-cagr-during-2018-2026/2931/
  4. Thats interesting Virginia! I wish I could recall...

    Thats interesting Virginia! I wish I could recall when I stopped estrogen, whether it was right before my first MS attack.
  5. Replies
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    TOday I swam 746 or something like that yards in...

    TOday I swam 746 or something like that yards in 22 minutes. Most of my time now is in the wheelchair. Short excursions in the rollator...seeing neuro in 12 days for quarterly.

    He is trying to...
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    THats a great looking ladder

    THats a great looking ladder
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    THis is so well said. This is me now with SPS...

    THis is so well said.
    This is me now with SPS without an ability to work. I am a total zombie. And its lonely and painful...
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    Today I swam 736 yards in 22 minutes. So far so...

    Today I swam 736 yards in 22 minutes. So far so good....
  9. Replies
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    Can you post a link to that Howie?

    Can you post a link to that Howie?
  10. View Post

    I don’t know. Good that the researcher is thinking about this. But, it just doesnt seem correct. The Yale prof of Neurology echoes my sentiment.

    Other things come along with women of few or no...
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    TY Laz. How awful for you.

    TY Laz. How awful for you.
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    For those doing well, avoid FT. However, for...

    For those doing well, avoid FT. However, for those doing poorly, the odds are still very low that this kind of thing would happen , and its worth the risk, IMO. But go into it knowing there is a...
  13. Functional Neurological Disorder vs Stiff Person Syndrome

    This is an article about a teen who looked like he has SPS. He went up to Mayo who undiagnosed him and said he has Functional Neurological Disorder. They put him in an intensive program of Cog...
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    I wonder why the home health nurse can get the...

    I wonder why the home health nurse can get the liquid, but not the hospital. Its not a done deal yet.Doc said to wait while he Meets them.

    As long as its safe, and they have a way of handling it...
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    Do hire it out agate. My uncle, a tall strapping...

    Do hire it out agate. My uncle, a tall strapping guy, fell off a ladder at age 65, flat on his back. No one was home. It was hours of laying there until he was able to rise up. He was lucky. Could’ve...
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    yesterday and today I swam 800 yards in 22...

    yesterday and today I swam 800 yards in 22 minutes. Felt good...
    Before the Ativan, on the really bad stiff legs.

    Today I took Ativan at 10 am. DH took me to look at the ocean for 15 minutes. Its...
  17. Replies
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    yesterday and today I swam 800 yards in 22...

    yesterday and today I swam 800 yards in 22 minutes. Felt good...
    Before the Ativan, on the really bad stiff legs.

    Today I took Ativan at 10 am. DH took me to look at the ocean for 15 minutes. Its...
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    As soon as the safety issue works out, I am on it...

    As soon as the safety issue works out, I am on it for DIY.
    I prefer to do it in a GI office where they plant a capsule of FT inside the gut...that seems less scary. I would try it. This SPS is no...
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    Very sweet funnylegs. The issue is very complex,...

    Very sweet funnylegs. The issue is very complex, true shortages, shortages due to Pharma wanting more profit and slowing production, more people using ivig off label than ever before and more using...
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    Jeanie you are amazing!! Great job getting back...

    Jeanie you are amazing!! Great job getting back your life! So happy t hear this!
  21. Replies
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    Re trolling Bots, agate: The SPS forum has far...

    Re trolling Bots, agate:
    The SPS forum has far less people viewing of course , as its a very rare disease. I notice that when I post something new, the count goes up.
    And, when I posted the link...
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    Again, this is correlational research, not...

    Again, this is correlational research, not causation... and it may be a spurious correlation. Example, it might be that higher rates of Csection are associated with an unknown factor that is more...
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    TY agate. Yes, I saw it in the news feed. And...

    TY agate. Yes, I saw it in the news feed. And showed it to DH and to my PCP in yesterdays visit,

    He has had many patients with FT for C diff that came along with other complex medical diagnoses....
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    Laz, ask for the STiff Person Syndrome blood...

    Laz, ask for the STiff Person Syndrome blood tests work up. Specifically, ask for the GAD65 test and the antiphysin blood test. If you google the diagnosis, you will see the blood tests. The rest of...
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    It could be. I also use it for Common Variable...

    It could be. I also use it for Common Variable Immune Deficiency. WIthout it, I am susceptible to infection. Before IVIG was constantly getting bronchitis and sinus infections—and pneumonia twice......
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    https://www.erienewsnow.com/story/40654673/local-t...

    https://www.erienewsnow.com/story/40654673/local-teen-battling-rare-disease-graduates-from-high-school
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    View Post

    The center called me to cancel my IVIG next week due to a national shortage of IVIG. They do not know when they will be able to get more. My reading online is that the shortage is expected throughout...
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    Shortage of IVIG

    My infusion center called and cancelled my next IVIG next week, indefinitely due to the national shortage of Gammaguard. This is scary and frustrating.
  29. View Post

    Cat’s home!
  30. Replies
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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,...
  32. Replies
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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...
  33. 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 :)
  34. Replies
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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...
  36. Replies
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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.
  38. Replies
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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...
  41. Replies
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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...
  42. Replies
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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...
  43. Thread: Politics

    by Sunshine
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    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...
  45. Replies
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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
  48. Replies
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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.
  49. Replies
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    Swam 800 yards in 22 minutes. DId fine..

    Swam 800 yards in 22 minutes. DId fine..
  50. Replies
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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...
  52. Thread: Politics

    by Sunshine
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    243,020

    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...
  54. 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,...
  55. Replies
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    IVIG went well. No spasms.

    IVIG went well. No spasms.
  56. Replies
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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...
  57. Replies
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    IVIG all day today.

    IVIG all day today.
  58. Replies
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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!
  59. Replies
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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.
    ...
  60. Replies
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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
  61. 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.
  62. 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.
  63. 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,...
  64. Thread: Bird Watching

    by Sunshine
    Replies
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    3,381

    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...
  65. Replies
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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
  67. Replies
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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...
  68. Replies
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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.
  69. Replies
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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...
  71. Replies
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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...
  73. 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...
  74. 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...
  75. Replies
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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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