Search:

Type: Posts; User: Sunshine 2; Keyword(s):

Page 1 of 2 1 2

Search: Search took 0.02 seconds.

  1. Replies
    9
    Views
    99

    View Post

    IVIG went well enough today. Let’s see if there is any benefit over the next day or day. No pain right now..
  2. Replies
    48
    Views
    1,039

    Sciatica is awful. I am new to that game and I am...

    Sciatica is awful. I am new to that game and I am sorry you have to go through that agate.

    Don’t worry so much about the number of steps. Its the number of steps, YOUR body can manage, and only...
  3. Replies
    48
    Views
    1,039

    Oops, I started the July thread, thinking today...

    Oops, I started the July thread, thinking today was July 1st :)
    Today I swam 1/2 mile. Today will get ready for ivig tomorrow, packing food for the whole 8 hours, meds, etc., make enough side dishes...
  4. Replies
    0
    Views
    44

    Keep on Moving: July 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...
  5. Good catch Agate. My nystagmus was due to...

    Good catch Agate.

    My nystagmus was due to high doses of Baclofen. When the Baclofen backed down, the nystagmus went away.
  6. Replies
    48
    Views
    1,039

    My legs are more affected by Stiff Person...

    My legs are more affected by Stiff Person Syndrome than my upper body. The entire time I am swimming, they are in pain from stiffening and threatening to spasm. I pick a time DH is home before work,...
  7. Replies
    25
    Views
    316

    View Post

    I haven’t had my hair cut since COVID set in. My risky behavior re covid is going to see a doctor, IVIG, and handling food DH brings home from the store, opening packages from the mail.

    And of...
  8. Replies
    48
    Views
    1,039

    Suze, its amazing! Yes,that is the key,...

    Suze, its amazing!
    Yes,that is the key, recognizing what is from disuse and what is neurologically driven in terms of walking.
    For me, spasms set it when I walk too much, and I am always using a...
  9. Replies
    147
    Views
    2,635

    So many reasons to stockpile meds. There are...

    So many reasons to stockpile meds.
    There are shortages of some meds. Good to have some to tide you over.
    Hurricanes happen and you might be out of enough pills to get you through until you can get...
  10. Another advice question on incompetent pooping

    The warm water enemas were very effective, but take 1.5 to 2 hours of time between resting on the bed, and racing to the toilet with my rollator. WIth the worsening SPS symptoms lately, this became...
  11. Replies
    147
    Views
    2,635

    View Post

    That’s 3 UTIs this past year, no?
    Time to see a urologist, in my experience. They can help determine why you are getting so many UTIs. UTIs can be deadly.
    Let me know if you want to know more...
  12. Replies
    147
    Views
    2,635

    View Post

    Howie, that stinks!
    There are “independent” pharmacies (I use one). They are not part of a conglomerate like Walgreens and CVS.
    Mine for example is staffed by family members, owned by two...
  13. Replies
    48
    Views
    1,039

    Swam 1/2 mile today. Resting...

    Swam 1/2 mile today. Resting...
  14. Replies
    48
    Views
    1,039

    I swam 1/2 mile this morning and it felt good....

    I swam 1/2 mile this morning and it felt good. The warm air, and warm pool were a perfect recipe. THen I cooked tonight’s dinner: a casserole. The base is sautéed fennel cubes with garlic in EVOO...
  15. Replies
    1
    Views
    317

    Another nice summary of SPS, posted by agate...

    Another nice summary of SPS, posted by agate (thank you).

    https://www.yahoo.com/lifestyle/5-things-know-stiff-person-224146623.html
  16. Replies
    45
    Views
    6,966

    https://www.deseret.com/utah/2020/6/19/21297030/ya...

    https://www.deseret.com/utah/2020/6/19/21297030/yard-sale-saturday-summit-academy-fundraiser-teacher-stiff-person-syndrome-ravien-parsons

    A story about a young woman, teacher with SPS, her...
  17. Replies
    8
    Views
    231

    I love ALL of your stories. You have areal way...

    I love ALL of your stories. You have areal way with words Laz. Whatever you write about is gripping and interesting!
  18. Replies
    48
    Views
    1,039

    Thanks Suze. And great numbers again!

    Thanks Suze. And great numbers again!
  19. Replies
    48
    Views
    1,039

    Swam 1/2 mile today in a broken down worsening...

    Swam 1/2 mile today in a broken down worsening body...hoping for improvement back to baseline broke body but not worsening body.
  20. Replies
    147
    Views
    2,635

    Hi Virginia!

    Hi Virginia!
  21. New approach to SPS with old medication

    https://pubmed.ncbi.nlm.nih.gov/18769864/

    You can read the abstract and share it with your doctor.
  22. Replies
    21
    Views
    578

    Thank you for letting us know Virginia. I know...

    Thank you for letting us know Virginia.
    I know about that dark hole.
    I know you will find ways to see some cracks of light come through.
    Not seeing any people at all, is stressful. I know that...
  23. Replies
    48
    Views
    1,039

    1/2 mile swim today. Cooked dinner this morning...

    1/2 mile swim today. Cooked dinner this morning with some help. Will rest up after early lunch, sleep a bit, then do pills if time.
  24. Replies
    21
    Views
    578

    How are you doing today Virginia?

    How are you doing today Virginia?
  25. Replies
    21
    Views
    578

    Virginia, how are you doing today?

    Worried about you I am.
    I hope you can check in ...
  26. Replies
    147
    Views
    2,635

    Virginia, how are you feeling today?

    Virginia, how are you feeling today?
  27. Replies
    147
    Views
    2,635

    Virginia, how are you feeling now. I will check...

    Virginia, how are you feeling now. I will check on you upon awakening.
    I fear that they could be COVID, or not. Have you called your PCP?
  28. Replies
    48
    Views
    1,039

    Great numbers suze!5437 That photo was one...

    Great numbers suze!5437
    That photo was one captured by a neighbor at 5 a.m. today affiliated with the Space-x link up with the ISS and some other type of separation...Just as weird as everything...
  29. Replies
    147
    Views
    2,635

    Let me know what you think of the movie?

    Let me know what you think of the movie?
  30. Replies
    147
    Views
    2,635

    I saw a very good movie on Netflix yesterday, if...

    I saw a very good movie on Netflix yesterday, if you can access it.
    It’s called Trumbo, made in 2015 and it has nothing to do with our president. Its a true story about a famous (then) Hollywood...
  31. Replies
    48
    Views
    1,039

    Swam 1/2 mile today, made the walnut encrusted ...

    Swam 1/2 mile today, made the walnut encrusted dish to smear on the fish that DH picks up at fish market today. Well make salad when he picks up the spinach. Count out some more pills for midweek.
    ...
  32. Replies
    147
    Views
    2,635

    Re landline: In the last hurricane, Jeanne,...

    Re landline:
    In the last hurricane, Jeanne, mylandline was up and running 3 weeks before the cell towers were working. But, that was 16 years ago, so I don’t know for now.
    But, so often my cell is...
  33. Replies
    147
    Views
    2,635

    My heart goes out to the parents whose son...

    My heart goes out to the parents whose son committed suicide. Depression (and addiction) remodel the brain and one can literally say that the person was not in his right mind when he decided to jump...
  34. Replies
    48
    Views
    1,039

    I swam 1/2 mile today, and then cooked the side...

    I swam 1/2 mile today, and then cooked the side dish of roasted 1/2 Brussels sprouts with purple onion,garlic slivers, and halved grapes slathered in EVOO, S and P...bake 25 minutes. 375F for...
  35. Replies
    48
    Views
    1,039

    Swam today 1/2 mile. So nice, and worth the...

    Swam today 1/2 mile. So nice, and worth the exhaustion it brings with it on my legs.
    Cooked a meal, resting . Alone. Quietly.
  36. I cannot say it more eloquently than those have....

    I cannot say it more eloquently than those have. But I always enjoyed reading about her life, and her loving photos of her family.
  37. Replies
    147
    Views
    2,635

    View Post

    WIth the doc’s blessing, I tried the glycerin suppository today. It did nothing. Oh well. Doubling the zofran has helped with the nausea a lot.
  38. Replies
    48
    Views
    1,039

    Suze, you have gotten very strong! I swam 1/2...

    Suze, you have gotten very strong!
    I swam 1/2 mile today and cooked dinner.
  39. Replies
    48
    Views
    1,039

    View Post

    That is great Jeanie! Don’t be so hard on yourself. Look at what your challenges are— youre working it, and doing what your body allows.
  40. Replies
    48
    Views
    1,039

    Swam today in warm drizzle. Felt good

    Swam today in warm drizzle. Felt good
  41. Replies
    147
    Views
    2,635

    IVIG all day tomorrow, docs thurs and fri

    IVIG all day tomorrow, docs thurs and fri
  42. Replies
    147
    Views
    2,635

    Doc visit today soon.

    Doc visit today soon.
  43. Replies
    48
    Views
    1,039

    Keep on Moving: June 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...
  44. Replies
    138
    Views
    3,336

    A friend recommended Colonhydrotherapy. I called...

    A friend recommended Colonhydrotherapy. I called the place to ask about it.
    The first week you go twice, second once and then as the two of you decide.
    It loosens up the feces in the rectum and...
  45. Replies
    30
    Views
    1,121

    I swam 1/2 mile today. It is warm enough for no...

    I swam 1/2 mile today. It is warm enough for no cover, so DH doesn’t have to do that for me and I don’t have to drag it back in from inside the pool.
    It has deteriorated, its a bubble vinyl cover...
  46. Replies
    2
    Views
    275

    If your dose of Baclofen is high enough, you...

    If your dose of Baclofen is high enough, you cannot just stop it. You ease off it by 5mg every two weeks. But I suspect you use low mg?
  47. Replies
    14
    Views
    433

    Happy Birthday AGate!!! We would be lost and...

    Happy Birthday AGate!!! We would be lost and dispersed without your leadership.
  48. Replies
    138
    Views
    3,336

    Rose, The enema water goes further up than the...

    Rose,
    The enema water goes further up than the rectum (I think?) Or does it not?
  49. Great article and thanks for posting it agate.

    Great article and thanks for posting it agate.
  50. Replies
    30
    Views
    1,121

    Swam 1/2 mile today. The cover is deteriorating,...

    Swam 1/2 mile today. The cover is deteriorating, so we removed it completely. Thinking, that now that it’s May, perhaps its incessant. The bubble pieces floating all over the pool. Parts of the cover...
  51. Replies
    138
    Views
    3,336

    Rose; what is MOM

    Rose; what is MOM
  52. Replies
    138
    Views
    3,336

    What is a glycerin suppository and why is it a...

    What is a glycerin suppository and why is it a good thing.

    If I drop the fiber, wont nutrition suffer?

    And why now, after the same diet forever, Does the nausea come UP?
  53. Replies
    138
    Views
    3,336

    [QUOTE=Earth Mother 2 Angels;96057]((((((Hugs to...

    [QUOTE=Earth Mother 2 Angels;96057]((((((Hugs to All)))))) ~

    Sunshine ~

    Have you tried: stool softeners, glycerin suppositories, prune juice, dates, papayas, Senna tea, Milk of Magnesia? Are...
  54. Replies
    0
    Views
    222

    Coping with SPS

    Due to SPS, my life has become one of isolation, as there is little I can do with friends except on occasion. WITH COVID, of course, many are self isolated,which means I have more texting fun than...
  55. Replies
    442
    Views
    51,083

    Still swimming 1/2 mile daily before DH goes to...

    Still swimming 1/2 mile daily before DH goes to work. However, the disease has created dysmotility of the GI tract, necessitating 2x weekly warm water enemas, which nixes out swimming for the day....
  56. Progressive nature of Stiff Person Syndrome: Article on longitudinal study

    https://pubmed.ncbi.nlm.nih.gov/30606131/

    This is a free Pubmed article by a leading researcher in SPS . It notes the progressive nature of the disease.
  57. Replies
    45
    Views
    6,966

    https://pubmed.ncbi.nlm.nih.gov/11050023/

    https://pubmed.ncbi.nlm.nih.gov/11050023/
  58. Replies
    138
    Views
    3,336

    I am still in my medical saga and it has become...

    I am still in my medical saga and it has become complicated with a very uncaring doc and staff. In midst of addressing that, and figuring out what to do about theses deal breaking sys.

    Swam...
  59. Replies
    138
    Views
    3,336

    Virginia, you can get meds for those spasms, and...

    Virginia, you can get meds for those spasms, and dont assume everything is MS! An underlying infex can also cause a “pseudo flare” such as a UTI.

    Meds: Tizanidine, Baclofen , low doses gave me no...
  60. BTW: You can register at medscape, and not pay a...

    BTW: You can register at medscape, and not pay a dime. You can ask for daily reports or weekly reports and ask for special interest areas.
  61. Replies
    30
    Views
    1,121

    Agate, theses are great numbers. When Bethany...

    Agate, theses are great numbers. When Bethany Hamilton in Soul Surfer (watch it on Netflix now) is puzzled why kids from all over th world wrote to her as an inspiration even though she did not win...
  62. View Post

    https://www.medscape.com/viewarticle/930683?nlid=135664_5653&src=wnl_newsalrt_daily_200522_MSCPEDIT&uac=287506DR&impID=2391897&faf=1

    Very interesting article on the disabled, or medically “frail”...
  63. Interferon speeds recovery from SARS and COVID

    https://www.medscape.com/viewarticle/930829?nlid=135644_5402&src=wnl_dne_200522_mscpedit&uac=287506DR&impID=2390895&faf=1

    The interferon used was IFN-a2b
  64. Replies
    30
    Views
    1,121

    I swam half mile today. Tomorrow is all morning...

    I swam half mile today.
    Tomorrow is all morning test on the nausea problem. Will be grueling.
    Then afternoon get ready for Wednesday infusion.
    Then medical even Thursday morning.
    Back to swim...
  65. I use lifeline that I got through the local VNA....

    I use lifeline that I got through the local VNA.
    It has fall protection, really any protection. If you fall, it calls you and if you dont respond, they call the contact person you have, and the EMT...
  66. Replies
    13
    Views
    488

    DId they think it was an infection, hence...

    DId they think it was an infection, hence erythromycin?
  67. Replies
    13
    Views
    488

    I read that MS can affect the vagus nerve that...

    I read that MS can affect the vagus nerve that controls part of the stomach. I think it results in a motility problem, and a problem with feeling full too quickly, and maybe not moving food into the...
  68. Replies
    13
    Views
    488

    View Post

    ANN: how did Your’s resolve. Was it just slowly over time?
    They hopefully will learn more from this test, or it will lead to more testing.
    Virginia, your words of support mean the world to me....
  69. Replies
    13
    Views
    488

    What I am up against: Still standing?

    Nausea has been intense for about 10 days, no vomit, waves throughout the day. Today was the worst. Shovel food in as can. Am on Protonix 2x day for months, zofran 4x day for months. GI doc added...
  70. Replies
    138
    Views
    3,336

    Still here. Still very sick. Not coronavirus...

    Still here. Still very sick. Not coronavirus sick. SPS related sick. Still swim but 3x week.
  71. Replies
    30
    Views
    1,121

    Swam yesterday1/2 mile. EEked out making supper...

    Swam yesterday1/2 mile. EEked out making supper with help, got ready for the infusion today. No swim tomorrow: must do 6 am 2 hour treatment, which is twice a week now....
  72. Replies
    138
    Views
    3,336

    IVIG all day today should help the walking and...

    IVIG all day today should help the walking and spasticity. Barely walked uyesterday and today.

    The other newer symptoms I am working on, but they are awful....leave t at that. Still will be scarce...
  73. Replies
    30
    Views
    1,121

    Keep on Moving May 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...
  74. Replies
    162
    Views
    4,144

    Doing very poorly. Might be scarce here for a...

    Doing very poorly. Might be scarce here for a bit....sorry ...
  75. Replies
    37
    Views
    1,396

    Fantastic numbers agate!

    Fantastic numbers agate!
Results 1 to 75 of 93
Page 1 of 2 1 2


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.