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  1. Replies
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    TOday I swam today. Will rest a while,get ready...

    TOday I swam today. Will rest a while,get ready for telemedicine tomorrow morning with neuro.
  2. Acoustic Startle Response in Stiff Person Syndrome

    https://mayoclinic.pure.elsevier.com/en/publications/the-acoustic-startle-reflex-in-stiffman-syndrome

    Unsure why Mayo calls it Stiffman syndrome.
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    Going to the doctor today re pain...will culture...

    Going to the doctor today re pain...will culture to see what’s going on, or is it “Just” SPS.
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    Love that song, Howie, love teh whole album (Dark...

    Love that song, Howie, love teh whole album (Dark side of the moon, by Pink Floyd)....
  5. Case study of use of atomize Versed for SPS

    https://nn.neurology.org/content/7/4/e715

    This is the same med as Nayzilam, it predated Nayzilam when the patient injected the versed into the atomizer and then sprayed the nasal chambers.
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    Today I swam 1/2 mile, and then set up side...

    Today I swam 1/2 mile, and then set up side dishes for dinner. Resting now. Tomorrow I see a Doc in person...should be okay, but who knows what tomrrow brings.
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    Keep on Moving: April 2020

    MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

    Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps...
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    Nayzilam for severe spasm

    Nayzilam as a treatment for severe spasm fast
    FDA just approved Nayzilam, It is versed in a nasal spray. You spray it in your nose and the spasm stops fast. Its like an emergency agent that can be...
  9. Nayzilam as a treatment for severe spasm fast

    FDA just approved Nayzilam, It is versed in a nasal spray. You spray it in your nose and the spasm stops fast. Its like an emergency agent that can be used anywhere , and by yourself , and without...
  10. Replies
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    I swam today. Rested most of the day after a...

    I swam today. Rested most of the day after a peripatetic hard rough day yesterday/
  11. Thanks, I sent it on to two MS patients who might...

    Thanks, I sent it on to two MS patients who might need the help
  12. Replies
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    Today I swam 1/2 mile,made out a grocery list for...

    Today I swam 1/2 mile,made out a grocery list for DH. Dinner is already cooked from yesterday....;
    Will start a cleaning station when the groceries come home.
    From Johns Hopkins I learned that...
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    Stiff Person Syndrome, COVID, Eviction

    https://www.reviewjournal.com/business/housing/some-weekly-las-vegas-renters-are-facing-eviction-even-with-a-freeze-1993147/

    This is heartbreaking. Sub the word “MS” or any debilitating disease...
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    Stiff Person Syndrome: COVID, Eviction

    https://www.reviewjournal.com/business/housing/some-weekly-las-vegas-renters-are-facing-eviction-even-with-a-freeze-1993147/

    This is heartbreaking. This is not the America I know...
  15. Replies
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    Exhausted. Too much to do to prepare for COVID,...

    Exhausted. Too much to do to prepare for COVID, tomrrow will be much better.
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    Happy Birthday Jendie!

    Happy Birthday Jendie!
  17. Replies
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    I am indeed going to IVIG today. Visitors are not...

    I am indeed going to IVIG today. Visitors are not allowed, so people will be spaced out, and bathrooms will be rarely in use: how it should always be imo.

    Yesterday I saw urologist to r/o UTI....
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    Happy BIrthday Jeanie!!!!

    Happy BIrthday Jeanie!!!!
  19. Replies
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    Happy Birthday ANN!!!

    Happy Birthday ANN!!!
  20. Replies
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    I swam 1/2 mile today. I had my telemedicine appt...

    I swam 1/2 mile today. I had my telemedicine appt with my new GI doc and I liked him a lot. So, I landed on my feet.

    Save your pennies. My adviser said we are heading into a Depression. What fun...
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    Summary of SPS:

    http://m.theindependentbd.com/magazine/details/242112
  22. Replies
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    Today I did the sheets which took most of the...

    Today I did the sheets which took most of the day, an tried to stay centered.
    DH went to store: very slim pickings. One will have to expand boundaries.

    They were out of flour I was going to make...
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    My two next doctors rescheduled: One is doing...

    My two next doctors rescheduled: One is doing telemedicine, the other (a new one) is using a telephone (Monday’s

    IVIG is for Wed. So far, not a word: i will call them this week.
    Cannot find flour...
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    Good job Jeanie I swam 1/2 mile today, kinda...

    Good job Jeanie
    I swam 1/2 mile today, kinda rested a lot today other than making a salad. This pandemic is exhausting...
  25. Replies
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    Maybe call the dentist and ask what to do? And...

    Maybe call the dentist and ask what to do? And what not to do? And the consequences of waiting. The COVID is going to get worse, not better, before it gets better...
  26. Replies
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    I agree Jeanie. It really just boils down to...

    I agree Jeanie. It really just boils down to practice once you have the moves down pat. Such determination :
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    View Post

    I’d go to a beach which is well spread out
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    Thanks for sharing your thoughts...we are all...

    Thanks for sharing your thoughts...we are all connected...
  29. CHronic Care Management : Medicare service that looks very helpful

    Have you used this?
    My new PCP signed me up for it. It give me 24 access to the doctor who can make things happen, through a triage nurse. That nurse can also send a phlebotomist to your house for...
  30. View Post

    Have you used this?
    My new PCP signed me up for it. It give me 24 access to the doctor who can make things happen, through a triage nurse. That nurse can also send a phlebotomist to your house for...
  31. Replies
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    I think if you sign up for a gmail email address,...

    I think if you sign up for a gmail email address, then you can access google’s services? I cannot figure out why else I can do this.
    I love having gmail: I only give that address to my friends. So,...
  32. Replies
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    Might not need the account to do this, Click on...

    Might not need the account to do this, Click on it. The little red loading circle should start. Then, the icon to start is a small triangle. Push the triangle, wait about 10 sec for it to load Be...
  33. Replies
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    https://drive.google.com/file/d/19zft4xoDkCJKuabDD...

    https://drive.google.com/file/d/19zft4xoDkCJKuabDD2RRuTuKlRYBBzbW/view
  34. Replies
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    I swam 1/2 mile, cooked some chicken, cleaned up...

    I swam 1/2 mile, cooked some chicken, cleaned up the kitchen, did my DH’s laundry and hung it up, slayed dragons at the Census Office, the Pharmacy, the Doc offices all via phones.
    DID at home...
  35. Replies
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    How did it go Jeanie?

    How did it go Jeanie?
  36. Replies
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    I have been swimming 1/2 mile daily still. The...

    I have been swimming 1/2 mile daily still. The air is warming up to mid 60s, making it less frigid to walk from the pool to the warm shower after.
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    SPS improves in pregnancy

    SPS improves in women after first semester of pregnancy.

    https://www.neurodiem.ca/news/symptomatic-improvement-of-stiff-person-syndrome-during-pregnancy-4y0q9Uz16SOKxiNLrlKfd3
  38. Replies
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    I swam 1/2 mile today. Lots of ankle spasticity...

    I swam 1/2 mile today. Lots of ankle spasticity today.
    Having trouble getting important meds to last through COVID. I guess its a national problme.
    Heard FEMA will be in charge of moving aid to...
  39. Replies
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    Sticky: Okay, will wait for a message from you as to...

    Okay, will wait for a message from you as to where to send my check. Have a good move and watch out for COVID on your way north...
  40. Replies
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    I swam today 1/2 mile in 87Fpool and 65F air....

    I swam today 1/2 mile in 87Fpool and 65F air. Winter is over in Florida for the far future.

    Was going to get together with surf buddies at my house this weekend, but there is a COVID concern so we...
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    Article on research on LDN: Encouraging

    https://www.medscape.com/viewarticle/926611?nlid=134449_5402&src=wnl_dne_200312_mscpedit&uac=287506DR&impID=2308632&faf=1#vp_2
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    IT worked perfectly. THe nurse was all in favor...

    IT worked perfectly. THe nurse was all in favor of the blanket, and showed me where to plug it in, very convenient. THanks for the good wishes.
  43. Replies
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    NARCOMS sent out a survey on the use of medical...

    NARCOMS sent out a survey on the use of medical marijuana and street marijuana to manage MS symptoms. Let’s see what they find.
  44. Replies
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    Virginia, how scary for you. Growing old seems so...

    Virginia, how scary for you. Growing old seems so filled with suffering, uncertainty.
  45. Replies
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    Tomorrow is IVIG all day long. Today is getting...

    Tomorrow is IVIG all day long. Today is getting ready for it, packing up the gear and the food etc. It is freezing there. I saw someone used an electric blanket. So, I bought one on line, the...
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    Sticky: As I do not do PayPal, is there a way to send a...

    As I do not do PayPal, is there a way to send a personal check?
  47. Replies
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    Message to TC: Anxiety is highly treatable....

    Message to TC:
    Anxiety is highly treatable. Hoarding is one form of anxiety. Grieving can increase the sensation of anxiety. I urge you to find a Cogntive Behaioral Therapist Psycoloigst, maybe even...
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    So, I have continued to use 1:1 THC/CB ratio...

    So, I have continued to use 1:1 THC/CB ratio medical Marijuana.
    I called to get some delivered to the house, the preferred method. And Boom...
    No longer is any delivery.
    The closest good and more...
  49. Replies
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    Looking for my thread on MMJ . It was a long...

    Looking for my thread on MMJ . It was a long thread. Can you see it?
  50. Replies
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    I swam 1/2 mile, warmer air of 64, pool 86F. Felt...

    I swam 1/2 mile, warmer air of 64, pool 86F. Felt just right.
  51. Replies
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    Sinus infection? Many in my area have a bad...

    Sinus infection?
    Many in my area have a bad cough and a sore throat: lasts about 2 weeks, some developed into bronchitis. Keep nursing yourself, if necessary, a trip to PCP if it worsens in a week?...
  52. View Post

    Ok, you can indeed add tags to other people’s threads, up to 7 tags.

    We can also bump very informative threads to the front page, without disturbing the ongoing threads such as our chit chat, or...
  53. Now, Ihave been using bag balm a long time, since...

    Now, Ihave been using bag balm a long time, since starting this thread. It has stopped skin breakdown from so much w/c sitting, combined with the PT advice to move off the pressure point for at least...
  54. Bumping for good information

    Bumping for good information
  55. Thread: Van?

    by Sunshine
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    Bumping for good advice, and I tagged the thread

    Bumping for good advice, and I tagged the thread
  56. How to add tags to your thread to attract new readers scanning the net

    5380

    Here is a screen shot of a tag I just added to the hand control thread I had started. I don’t know if ou can tag a thread you didn’t personally start. But, I do know that you can add tags you...
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    When I was building the SPS forum, there was an...

    When I was building the SPS forum, there was an option at the bottom of the thread to put a tag on it. So, for example, I would add on the MMJ thread: Stiff Person Syndrome, Marijuana, treatment.
    ...
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    I swam 1/2 mile 58F air and 87F pool. FElt good.

    I swam 1/2 mile 58F air and 87F pool. FElt good.
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    Good new article on SPS and treatments

    https://www.rareconnect.org/uploads/documents/stiff-person-syndrome-review.pdf

    Excellent review of SPS and treatments. It’s grim in some respects.
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    Driving with hand controls

    I cannot drive yet due to my feet and legs. Yet.
    Am toying with idea of a vehicle with hand controls.
    Wishing one could try them out before plunking down the zillion dollars.
    Thinking of...
  61. Replies
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    I was thinking that in addition to these support...

    I was thinking that in addition to these support threads, maybe posting more informational threads to draw in new readers? Otherwise, we might look like a tight knit, supportive, but tight knit...
  62. Replies
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    Perfect Jeanie :) So very glad to hear that....

    Perfect Jeanie :)

    So very glad to hear that.

    Swam 1/2 mile today.

    Had a good day yesterday.
  63. Replies
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    I swam yesterday my usual swim. Taking 4 ativans...

    I swam yesterday my usual swim. Taking 4 ativans spread across the day helps me to do things like cook a meal during the day, and rest less. And less pain if I am off my feet for a time.

    Today two...
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    Swam 1/2 mile and cooked for an hour. Resting now.

    Swam 1/2 mile and cooked for an hour. Resting now.
  65. The Jews are blamed for many world catastrophes,...

    The Jews are blamed for many world catastrophes, no matter how convoluted the argument is.
    THey will say it started in the Mideast and was “planted” by Jews in CHina to make China the culprit.
    You...
  66. Replies
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    Keep on Moving: March 2020

    MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

    Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps...
  67. Replies
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    5,034

    There is an independent pharmacy here that...

    There is an independent pharmacy here that delivers for free. Sometimes they cannot match those deals. Their prices are compatible with the big box for the most part, but their service is fast,...
  68. View Post

    If the Israeli’s cure this virus, then they will be told that the Jews started the virus and then cured it to look heroic. Dollars to donuts.
  69. Israeli breakthrough in development of Coronavirus vaccine

    https://www.jewishpress.com/news/science-and-tech/israeli-researchers-make-breakthrough-in-development-of-coronavirus-vaccine/2020/02/27/
  70. Replies
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    I still swim every day except an early doc day or...

    I still swim every day except an early doc day or IVIG day.Today I swam the 1/2 mile, but in 46F air, 86F water temp. A 1/5mm wetsuit top and capri and vest helped make it bearable to get from the...
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    An article about ocular manifestations in some...

    An article about ocular manifestations in some people with Stiff Person Syndrome...
  72. Replies
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    Thank you David for laying own the dilemmas....

    Thank you David for laying own the dilemmas.
    Your decision is a good one, and the points others made are also good.
    I for one am very glad you maintain this community. Being isolated due to...
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    Cure on the Horizon for MS and ?

    https://theheartysoul.com/cambridge-scientist-on-verge-of-curing-multiple-sclerosis/?utm_source=msgs
  74. Replies
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    It took me several weeks to realize that I was...

    It took me several weeks to realize that I was getting high anxiety and suicidal thoughts but no intention, (the thoughts horrified me) from a new GI med. It is a black box warning.IT worked well,...
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    Still here. Suffering. Still and always a...

    Still here.
    Suffering.
    Still and always a member of BT.
    Will post as can.
    Referred a local MS patient to this board.
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