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  1. Replies
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    We are such a great community. Every one of us...

    We are such a great community. Every one of us contributes something important, even Sam.
    Thank you Rose for this info for Laz. Crossing fingers...
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    Yesterday I swam 22 minutes 800 yards. Today is...

    Yesterday I swam 22 minutes 800 yards. Today is IVIG all day long at hospital and sister is in town. Will check in when possible to catch up...on everyone...
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    IVIG all day today Sister is in town. Will be...

    IVIG all day today Sister is in town. Will be back to read when I can tonight or tomorrow...
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    Yesterday I swam 800 yards in 22 minutes. Today I...

    Yesterday I swam 800 yards in 22 minutes. Today I am in IVIG all day, and won’t be swimming in preparation for the infusion. So glad the hospital scored a batch of IVIG. They said its a one time...
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    Hey there Pat. I sure do understand. If you feel...

    Hey there Pat. I sure do understand. If you feel comfortable, tell me more about your challenges etc.

    Today I am in IVIG for 8 hours, so I won’t be able to respond until the end of the day, or if...
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    View Post

    Oh no, Laz—-this is very tough. ...hoping things improve. We are here for you.
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    Nice going Virginia!

    Nice going Virginia!
  8. Replies
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    Today I swam 22 minutes, 800 yards, after two...

    Today I swam 22 minutes, 800 yards, after two spasms before 4:30 a.m. Then grocery shop. Resting now.
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    Today I swam 22 minutes, 800 yards, after two...

    Today I swam 22 minutes, 800 yards, after two spasms before 4:30 a.m. Then grocery shop. Resting now.
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    Two brief spasms in left ankle and foot at 3:45am...

    Two brief spasms in left ankle and foot at 3:45am and 4:10am today— first spasms in weeks. IVIG is Thursday at the hospital. Hoping it halts this trend...
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    Thats great news Jeanie!! Keep on healing and...

    Thats great news Jeanie!! Keep on healing and doing what youre doing that is helping you to heal!


    Two brief spasms in left ankle and foot at 3:45am and 4:10am today— first spasms in weeks. I...
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    Hey Virginia! Happy Birthday to you!!!...

    Hey Virginia! Happy Birthday to you!!!
    *bunch*boogie*mm1*mm2
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    Soscary that there are food shortages

    Soscary that there are food shortages
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    https://kdvr.com/2019/07/15/denver-woman-battling-...

    https://kdvr.com/2019/07/15/denver-woman-battling-one-in-a-million-disease/
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    Today the hospital called: They have an infusion...

    Today the hospital called: They have an infusion med. I will do it at the hospital Thursday. My sister who was coincidentally flying down Wednesday night, will come with me , drive me, etc since DH...
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    I am glad you were able to find such a great...

    I am glad you were able to find such a great friend. Its hard enough when well, but when ill, its even harder.

    Today the hospital called: They have an infusion med. I will do it at the hospital...
  17. Thread: Instacart

    by Sunshine
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    Hi Rose, There is no Whole Foods within about 25...

    Hi Rose,
    There is no Whole Foods within about 25 miles from my home. There is a Publix within 2 miles, but the delivery is very pricey, and I am not needing that expense. Yet.

    So far, my rickety...
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    Oh man Laz, so unfair. Do they know whey he got...

    Oh man Laz, so unfair. Do they know whey he got infected. Hoping it is not the surgeon’s fault for sure. Maybe important to nail it down before he second eye. Glad they are holding off until first...
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    Today I swam 1/2 mile in 24 minutes, then grocery...

    Today I swam 1/2 mile in 24 minutes, then grocery shopping, and now resting.
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    Today I swam 1/2 mile in 24 minutes, then grocery...

    Today I swam 1/2 mile in 24 minutes, then grocery shopping, and now resting.
  21. Thread: Instacart

    by Sunshine
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    Thats a good review Virginia. I suppose the day...

    Thats a good review Virginia.
    I suppose the day may come when I will need it. Being more rural, the local store just started delivery, but its very pricey : Every item is marked up, and then there...
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    I am glad you were entertained by the book. Why...

    I am glad you were entertained by the book. Why judge yourself on “improving the mind”?
    I see no problem with reading for enjoyment and entertainment!
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    Thanks for checking in Virginia. It was so unlike...

    Thanks for checking in Virginia. It was so unlike you to be absent for days, and that is why I was wondering if all was good with you.
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    Today I swam 803 yards in 23 minutes. The legs...

    Today I swam 803 yards in 23 minutes.

    The legs are very stiff today, but I am still walking a fair amount, thankfully...This stiffening is just so weird and uncomfortable...I suppose many people...
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    Today I swam 803 yards in 23 minutes. The legs...

    Today I swam 803 yards in 23 minutes.

    The legs are very stiff today, but I am still walking a fair amount, thankfully...
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    I wonder if she is at her brothers?

    I wonder if she is at her brothers?
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    Excellent Jeanie!

    Excellent Jeanie!
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    https://www.medscape.com/viewarticle/915479?nlid=1...

    https://www.medscape.com/viewarticle/915479?nlid=130627_5295&src=wnl_dne_190712_mscpedit&uac=287506DR&impID=2026928&faf=1

    Its worth it, and free, to register at medscape to see current medical...
  29. Replies
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    This morning I swam 1/2 mile in 22 minutes, a...

    This morning I swam 1/2 mile in 22 minutes, a personal best, and similar to the rate I used to swim before SPS...
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    Today I swam 1/2 mile in 22 minutes.

    Today I swam 1/2 mile in 22 minutes.
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    Excellent! There goes your worry about bursting...

    Excellent! There goes your worry about bursting colons, down the drain. Literally!
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    Thank you so much for saying that Cherie. I had...

    Thank you so much for saying that Cherie. I had no idea that these things are contraindicated in Diverticulitis! And thankfully you are so educated that you knew not to try it just cuz someone on...
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    Over the years, I have had the pleasure of...

    Over the years, I have had the pleasure of hearing about the programs you present. You cover all the bases that I would hope to want to hear about.

    Maybe issues of isolation, being handicapped in...
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    Today I swam 23.5 minutes, 800 yards. I have been...

    Today I swam 23.5 minutes, 800 yards. I have been having some back problems and thought swimming aggravated it. So I paid attention to my stroke.

    Breast strokedoesnt aggravate it, but it is so...
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    I am closing in the end of DInner with Buddha,...

    I am closing in the end of DInner with Buddha, the last of the trilogy (Breakfast with B was the best, Lunch was so so, DInner is pretty good) must read them in order or it doesn’t make sense.
    ...
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    Today I swam 23.5 minutes, 800 yards. I have been...

    Today I swam 23.5 minutes, 800 yards. I have been having some back problems and thought swimming aggravated it. So I paid attention to my stroke.

    Breast strokedoesnt aggravate it, but it is so...
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    CHerie: Here is my daily regimen for med induced...

    CHerie: Here is my daily regimen for med induced severe constipation:
    Lactulose, Senakot, stool softener (Docusate sodium), Benefiber, ...you start off with modest doses, and then increase per PCP....
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    Poor walking today, mostly in wheelchair. Might...

    Poor walking today, mostly in wheelchair. Might be because I messed up and took my 30mg Baclofen and 8 mg Tizanidine at 10:22 pm instead of 12:30am. ...hope it will resolve by tomorrow...
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    TY Rose for the great suggestions. You buy the...

    TY Rose for the great suggestions.
    You buy the RN in two hour blocks, but its the same RN for the entire infusion. I will pay through the nose for the first infusion, since its been so long, and...
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    Great going agate! What are the diet changes you...

    Great going agate! What are the diet changes you made to raise potassium, potentially?

    Yesterday I walked more on rollator, much less on R2D2 than the past month. Perhaps its the antibiotic...
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    View Post

    Agate:
    Try Michael Connelly’s Two Kinds of Truth, or the Late Show. To me , he is the best mystery writer out there (noir detective writer). His commentary on character, police investigation...
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    Jeanie, you are making great progress. You have...

    Jeanie, you are making great progress. You have so much determination.
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    Also hoping that the infusion center will...

    Also hoping that the infusion center will eventually get he products and that the shortage will end, and that there will be peace around the world, sexism will end, as will racism and disease.....
  44. How to Sign up for alerts on recalled biologic products

    You can sign up to receive alerts if there is a recall on your Ig product.
    The company Site is:
    http://patientnotificationsystem.org/

    This is a free service. They will alert you via email, text...
  45. Alert re recalled Immunoglobulin meds products

    You can sign up to receive alerts if there is a recall on your Ig product. I do this.
    The company Site is:
    http://patientnotificationsystem.org/

    This is a free service. They will alert you via...
  46. BTW, you can sign up to receive alerts if there...

    BTW, you can sign up to receive alerts if there is a recall on your Ig product.
    The company Site is:
    http://patientnotificationsystem.org/

    This is a free service. They will alert you via email,...
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    Bump to page one.

    Bump to page one.
  48. Kindness Matters in the Medical Profession

    https://www.healio.com/ophthalmology/practice-management/news/print/ocular-surgery-news/%7B38acab1c-968a-4cb9-a93b-2423fdcd5ad4%7D/kindness-matters-in-the-patient-experience

    Wonderful interview...
  49. Kindness matters in the Patient Experience

    https://www.healio.com/ophthalmology/practice-management/news/print/ocular-surgery-news/%7B38acab1c-968a-4cb9-a93b-2423fdcd5ad4%7D/kindness-matters-in-the-patient-experience

    This is a printed...
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    Today I swam 826 yards in 23 minutes. Nice and...

    Today I swam 826 yards in 23 minutes. Nice and stiff legs and back by the end of the swim.
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    Peter as a Tai Chi master! Howie, have you...

    Peter as a Tai Chi master!

    Howie, have you watched any Tai Chi on YouTube to see if it appeals to you?

    Today I swam 826 yards in 23 minutes. Nice and stiff legs and back by the end of the swim.
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    So glad Cherie is showing some improvement. Keep...

    So glad Cherie is showing some improvement. Keep on keeping on Cherie...

    Virginia, so much going on with you...So glad you come here and talk about it.

    Jeanie: so nice to open up the site and...
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    Laz, that is a good story. That woman will...

    Laz, that is a good story. That woman will remember you forever...

    Off Ativan today, and it was bad day of awful pain. Nothing helped it. My youngest was there to see me burst into tears from...
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    So, I did Ativan for two days in a row, and life...

    So, I did Ativan for two days in a row, and life was so much better on it with respect to walking and pain. Did not have to use MMJ at all, barely used the wheelchair, only used the Rollator to catch...
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    Yesterday I swam 22 minutes, 800 yards. Half done...

    Yesterday I swam 22 minutes, 800 yards. Half done back stroke. The freestyle causes pressure on foot due to kicking which triggers spasm in that foot yesterday, but back stroke doesnt do that.
  56. Replies
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    Yesterday I swam 23 minutes, 800 yards. Doing...

    Yesterday I swam 23 minutes, 800 yards. Doing half of it back stroke due to foot problems: The freestyle causes spasms in one foot due to pressure of kicking during freestyle.
  57. Replies
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    So, I did Ativan for two days in a row, and life...

    So, I did Ativan for two days in a row, and life was so much better on it with respect to walking and pain. Did not have to use MMJ at all, barely used the wheelchair, only used the Rollator to catch...
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    I cannot do tai Chi. But its beautiful to watch....

    I cannot do tai Chi. But its beautiful to watch. My friends adore it. My friend teaches Tai Chi and extols all of its benefits. If you are physically able to do it, GO FOR IT
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    Virginia, I buy my shower stool and shower chair...

    Virginia, I buy my shower stool and shower chair at a medical supply store, They put it together. Maybe its a better quality?
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    So glad my youngest is here with us in Florida....

    So glad my youngest is here with us in Florida. But goes back sunday night to So. Calif... worried about our MS people, and my two other family members in S Calif— so far, it looks like the epicenter...
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    Cataract Surgery information for Laz

    Linda, I had successful cataract surgery in February. It was a conveyer best operation, but the surgeon is known for his skills to the point that people fly into our small town to see him. He is...
  62. Rituximab and Stiff Person Syndrome: Research

    https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.25002

    This study compares the effect of Rituximab versus placebo on SPS, and interprets it. I like the fact that the lack of difference between...
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    https://journals.lww.com/neurotodayonline/blog/AAN...

    https://journals.lww.com/neurotodayonline/blog/AANEMAnnualMeetingBlog/Pages/post.aspx?PostID=3

    Longitudinal study of SPS shows it worsens over time. Gold standard treatment to delay worsening...
  64. Replies
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    Today I swam 800yards 22 minutes while my DD was...

    Today I swam 800yards 22 minutes while my DD was asleep. She awoke midway through the swim. So sweet to have her home. She owns my heart.
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    Today I swam 800yards 22 minutes while my DD was...

    Today I swam 800yards 22 minutes while my DD was asleep. She awoke midway through the swim. So sweet to have her home. She owns my heart.
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    Cat and Jeanie, I cannot tell you enough how...

    Cat and Jeanie, I cannot tell you enough how wonderful it is to have you back and healing. I know the healing is tough going, but it sure is nice to see you back.

    Re my PCP. Years ago he took care...
  67. Replies
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    My youngest is visiting this weekend. Will take...

    My youngest is visiting this weekend. Will take an Ativan soon so I can enjoy the visit more, since it helps with walking and stiffening.

    So sad that SPS impacts my family so hard. To know how...
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    Youngest and DH are fast asleep now. Youngest...

    Youngest and DH are fast asleep now. Youngest arrived 2 hours late at 2am across the state.

    They drove all night awake to get home. I am very disappointed in the airline: they knew they were...
  69. Thread: Robocalls

    by Sunshine
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    Re Robocalls, I used to get them ALOT. I got...

    Re Robocalls,
    I used to get them ALOT. I got good at knowing which ones they were by their numbers. If I got tricked, I would pick up the cell phone and say nothing. After each of these calls there...
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    Cherie, that is the pits. I have heard its very...

    Cherie, that is the pits. I have heard its very painful and I am sorry you are dealing with it. Hoping the meds help.

    Rose: What a year you are having. Earthquakes are very unnerving . I have 3...
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    Yes, I am on Augmentin now. Swam 800 yards 22...

    Yes, I am on Augmentin now.
    Swam 800 yards 22 minutes today.
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    https://www.dailychronicle24.com/2019/07/03/immuno...

    https://www.dailychronicle24.com/2019/07/03/immunoadsorption-columns-market-overview-cost-structure-analysis-growth-opportunities-and-forecast-to-2028/
  73. Replies
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    View Post

    Yesterday i didn’t swim cuz I had an early appointment with neuro that went fine. Today I swam 746 yards in 21 minutes before going to a 9 am appointment with PCP. Dxd Sinus infection.
  74. Replies
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    Totally awesome Virginia!

    Yesterday i didn’t swim cuz I had an early appointment with neuro that went fine. Today I swam 746 yards in 21 minutes before going to a 9 am appointment with PCP. Dxd...
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    Hello. Too much happening for me to keep up wit...

    Hello. Too much happening for me to keep up wit the poss. Nuthatch, sorr y to hear about your eyes...
    Cherie, that sounds awful Slow down girl.

    Saw neuro yesterday and PCP today. PCP Rx antibx...
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