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  1. Glad to hear it was a nice day. 51 years wow! ...

    Glad to hear it was a nice day. 51 years wow! Happy Happy Joy Joy
  2. Have a wonderful day, you guys!��

    Have a wonderful day, you guys!��
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    Happy Belated Birthday, Agate. Thank you for all...

    Happy Belated Birthday, Agate. Thank you for all you do for this community.
    ������
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    Where the crawdads sing was so good I had to...

    Where the crawdads sing was so good I had to finish it before I could go to sleep at like 730 this morning. Compelling some notes of social justice which was good because I had just come from a...
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    I am finishing Where the crawdad sing by Delia...

    I am finishing Where the crawdad sing by Delia Owens.
    Well written, I’m listening to it on audible.
  6. Thread: Mayzent

    by ssusan
    Replies
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    492

    Exactly . I see MS specialist next week. Hoping...

    Exactly . I see MS specialist next week. Hoping she does more than just document how much function I have lost. Would love to discuss next steps ( so to speak ).
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    Sending positive healing qi.

    Sending positive healing qi.
  8. I am secondary progressive and Ocrevus is not...

    I am secondary progressive and Ocrevus is not working. I am interested but concerned over possible heart issues.
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    Have a splendiferous birthday, Ann.

    Have a splendiferous birthday, Ann.
  10. Thanks for your replies. A farmers market pal...

    Thanks for your replies. A farmers market pal died earlier this month from complications of MS. Last time I saw him was a few years ago .
    Susan
  11. When it says in the newspaper that someone died of complications of multiple sclerosi

    When it says in the newspaper that someone died of complications of multiple sclerosis, what does that mean? What are the complications that would kill you? Your esophagus closing? Swallowing issues?
  12. Sounds wonderful, Linda. Happy happy

    Sounds wonderful, Linda. Happy happy
  13. Replies
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    I just finished ‘The Invention of Wings’ by Sue...

    I just finished ‘The Invention of Wings’ by Sue Monk Kidd. It’s a historical novel that takes place in South Carolina in the 1800s. Two girls , friends from an early ag one is a slave, the othe...
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    Happy Belated birthday, Howie.

    Happy Belated birthday, Howie.
  15. Replies
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    I ‘read’ it on audible. Michelle is the reader...

    I ‘read’ it on audible. Michelle is the reader so she is telling her story. LOVEd it.
    I was making chicken soup the other day while listening to it.
    I was so happy.
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    So sorry to hear of your present situation. MS...

    So sorry to hear of your present situation. MS sucks!
    This too shall pass. Sigh
  17. Replies
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    Very exciting . Kudos to your persistence and...

    Very exciting . Kudos to your persistence and determination!
  18. Replies
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    After first 1/2 dose I did, but some of that was...

    After first 1/2 dose I did, but some of that was the steroid pre-drug. Nothing from the second 1/2 dose nor

    the two full doses I’ve had since. I had the worst exacerbation I’ve ever had in...
  19. Replies
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    Hi Dar, So glad it’s doing something for you. I...

    Hi Dar,
    So glad it’s doing something for you. I have been on it since 7/17. It does not appear to be doing anything. My MS has continued to progress . But I guess I’ll continue to do it every...
  20. If Ampyra worked as it did when it first came...

    If Ampyra worked as it did when it first came out, it would be worth every penny. It was a miracle drug.
    But alas, no. It did nothing. :-(
  21. Good to know. Thanks

    Good to know. Thanks
  22. Wow. Amazing kid-great invention!

    Wow. Amazing kid-great invention!
  23. View Post

    I just wrote a whole thing and it’s gone. Ampyra was a miracle for me and then it stopped working after a few years. It had Given me part of my life back.
    I decided to give it another try a few...
  24. Replies
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    Thanks you guys! It was a wonderful birthday. ...

    Thanks you guys! It was a wonderful birthday. Thanks for the good wishes.
  25. Replies
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    Loving ,’Cutting for Stone’ By Abraham Verghese

    Loving ,’Cutting for Stone’ By Abraham Verghese
  26. Replies
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    I will finish Educated tomorrow. It has been...

    I will finish Educated tomorrow. It has been intense. I have loved seeing the author’s evolution. It is not a straight line however. It moves kinda like the stock market. It goes up and up and...
  27. Replies
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    It’s disturbing.

    It’s disturbing.
  28. Replies
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    Mixing things up. I’m reading(audible) Educated. ...

    Mixing things up. I’m reading(audible) Educated. A memoir.
    It was on Obama’s 2018 Summer reading list. It’s the story of a survivalist family in Idaho. I just started it. Scary stuff.
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    I am just finishing the The Water is I wide. Pat...

    I am just finishing the The Water is I wide. Pat Conroy is a wonderful storyteller and his use of language, humor and sense of social justice has made this a wonderful read. Years ago I had read...
  30. I have assumed the massive heart attack I had in...

    I have assumed the massive heart attack I had in 2005 as unrelated to MS (probably). I had an artery completely blocked. .I had never had my cholesterol checked and bp was a iittle high but i always...
  31. Replies
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    I am ‘reading’ Pat Conroys’s first book The Water...

    I am ‘reading’ Pat Conroys’s first book The Water is Wide’. Great as an audible because the reader has the perfect South Carolina accent. It is about his teaching experience at an island off the...
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    Guiltless munchie

    Guiltless munchie
  33. Thanks , Agate. Rituxon dose can vary. Ocrevous...

    Thanks , Agate. Rituxon dose can vary. Ocrevous iDose always the same.
  34. Let me try it this way, why is the protocol for...

    Let me try it this way, why is the protocol for Rituxon twice two weeks apart and then every six months.Ocrevus is once every six months. Everyone gets the same dose 600 mg
    I think Rituxon is the...
  35. Why do they do Rituxon two weeks apart. Is it a...

    Why do they do Rituxon two weeks apart. Is it a half dose like the Ocrevus first time?
  36. Replies
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    This is encouraging. Had to cancel Original appt...

    This is encouraging. Had to cancel Original appt because sick but rescheduled for Tuesday
    Thanks for sharing it.
  37. Replies
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    Sorry, Linda. Didn’t see this. Americanah by ...

    Sorry, Linda. Didn’t see this. Americanah by Chimanda Ngozi Adichie
  38. Replies
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    Have a wonderful birthday,Virginia 🌻🎂🌺

    Have a wonderful birthday,Virginia 🌻🎂🌺
  39. Replies
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    I have Americanah as my next book.

    I have Americanah as my next book.
  40. Replies
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    Scheduled for July 23. Fingers crossed it does...

    Scheduled for July 23. Fingers crossed it does something this time.
  41. Replies
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    Sunshine, I believed their love pre accident; ...

    Sunshine, I believed their love pre accident; when she discovered that he was cognizant when she returned to Alaska I think author didn’t deeply explore his awakening. It would have been another 500...
  42. Replies
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    View Post

    I “read” (audio) most of Kristin Hannah’s new book, the Great Alone’ in the last two daze.

    It’s good, dark. I have always been a voracious reader but between my vision and concentration it’s been...
  43. Happy Anniversary, one and all🥂🌈🌻

    Happy Anniversary, one and all🥂🌈🌻
  44. Replies
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    A belated happy birthday, Agate!

    A belated happy birthday, Agate!
  45. I think I can, I think I can...a few weeks and...

    I think I can, I think I can...a few weeks and you get spinach. Bad timing with the market just starting but keep things small until after spinach. ❤️

    This article rings So true.
    Hoping my...
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    Cherie, where in NEw Hampshire?

    Cherie, where in NEw Hampshire?
  47. Thread: MS Walk

    by ssusan
    Replies
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    I am overwhelmed. People are amazing.

    I am overwhelmed. People are amazing.
  48. Thread: MS Walk

    by ssusan
    Replies
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    MS Walk

    My team, Team Remy, has raised $8300 so far. Crazy.
  49. Replies
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    My MS has been kickin my butt. I had ver...

    My MS has been kickin my butt. I had ver positive response to first dose last summer. Don't feel like I got anything from it in January. Hopeful for July .
    I see neuro in a few weeks.
  50. Replies
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    new group on Facebook for Ocrevus users

    It is called Ocrevus for PPMS and SPMS. It began last month. It is a closed group so you need to join the group.
  51. whoops. That guy was the guy at the gym who had...

    whoops. That guy was the guy at the gym who had stated that the cure for amS had been found. Sorry I was unclear.
  52. I had a good discussion with that guy. He had...

    I had a good discussion with that guy. He had seen the stem cell cure in a science journal he gets.
  53. Replies
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    Have a wonderful birthday, Ann! ��������

    Have a wonderful birthday, Ann! ��������
  54. Thanks, Linda. I figured I was not a canididate...

    Thanks, Linda. I figured I was not a canididate but long term results don’t look great. Flowers for Algeron comes to mind.
  55. I walked into the gym on Thursday. I am...

    I walked into the gym on Thursday. I am presently fundraising for the MS Walk. Perhaps this is why he thought he was being helpful when he told me excitedly that the found the cure for MS. Stem...
  56. Thread: Reiki?

    by ssusan
    Replies
    8
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    1,102

    Board like-extremely stiff.

    Board like-extremely stiff.
  57. Thread: Reiki?

    by ssusan
    Replies
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    Thanks for sharing your experiences. This woman...

    Thanks for sharing your experiences. This woman is a reiki master as well a skilled well trained massage therapist. My nervous system is wrung tight. I've got nothing to lose.
  58. Thread: Reiki?

    by ssusan
    Replies
    8
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    1,102

    Reiki?

    Has anybody tried it?
    The person I g to for massage is out for a few months. I asked her sub if she could work on my feet. Th have been quite board like. She asked if she could do some reiki. ...
  59. Replies
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    Happy Birthday, Linda. A defineively rainy...

    Happy Birthday, Linda. A defineively rainy day-your favorite ! ������
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    Happy birthday, Cat 🎂🌻

    Happy birthday, Cat 🎂🌻
  61. Replies
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    View Post

    That’s great news, Linda. Sounds like she had done her homework.
  62. Replies
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    I had the full dose today. Went fine. Tired but...

    I had the full dose today. Went fine. Tired but okay. Hoping for positive results. Apparently I am the first at Baystate to get the full dose. Last summer when I was there there we a few other...
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    Peg, I had to find a neurologist in our region of...

    Peg, I had to find a neurologist in our region of Massachusetts who has privileges at local hospitals. It took calling a lot of offices to find somebody. It is very worth it, so I don’t have to...
  64. Replies
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    Peg, I had to get a second neurologist who Has...

    Peg, I had to get a second neurologist who Has prívleges at hospitals in my region
  65. Replies
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    Ocrevous scheduled Yay!!!

    Almost 6 months have gone by.
    Scheduled for 1/23. Can’t wait!!!
    Whatever benefit I got from first infusions didn’t last more than a few weeks.
    Has anyone done 2nd one at six months?
    How long...
  66. You were so strong All growing season. AmaZing....

    You were so strong
    All growing season. AmaZing. Go Linda
  67. Replies
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    Thanks Howie

    Thanks Howie
  68. Replies
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    I filled out basic application and a guy from the...

    I filled out basic application and a guy from the Perkins Institute called. I asked him a number of questions. I qualify clearly. I asked who are the Readers. Generally volunteers or staff.
    A...
  69. Replies
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    I filled out basic application and a guy from the...

    I filled out basic application and a guy from the Perkins Institute called. I asked him a number of questions. I qualify clearly. I asked who are the Readers. Generally volunteers or staff.
    A...
  70. Replies
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    Checking out bard. Apparently you can download...

    Checking out bard. Apparently you can download books onto iPhone and iPad/. There are some glitches but looking forward to trying out.
    Thank you so much.
  71. Replies
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    Thank you. I will check this out. Logistically,...

    Thank you. I will check this out. Logistically, what is the cartridge ?
  72. Replies
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    Audio books advice

    aa
    Audio books have never appealed to me (I want the voices in my head). That said, although I have always been an avid reader. I have not read a lot the past few years.
    My vision is messed up...
  73. Replies
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    That's good. Not sure what's up with UMass...

    That's good. Not sure what's up with UMass Memorial.
  74. Replies
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    Excellent questions

    Excellent questions
    I have no idea. It was a two minute conversation at the end of my appointment
  75. Replies
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    I am all set. I get it at Baystate in...

    I am all set. I get it at Baystate in Springfield. From looking on line They are giving it at Mass General in Boston. UMass Memorial in Worcester did it briefly. The hospital not being...
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