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    Today I swam 1/2 mile. Rested, getting ready for...

    Today I swam 1/2 mile. Rested, getting ready for my telemedicine with doc. Then will crash. Then will make a salad if I can do it. So tired of this nausea, of it all, frankly, But I still have hope...
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    I don’t know how I did that extra cooking re lasagna. It really pushed my limits, and if had to do it again, would’ve done take out. I just thought I would do it a step at a time, and if at anytime...
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    With Stiff Person Syndrome, Tricyclics of which...

    With Stiff Person Syndrome, Tricyclics of which Pamelor is one, SNR’s and Duloxetine are all Not good for people with SPS, it worsens the stiffening, spasticity, spasms. So there is a narrow window...
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    Today I did not swim. I made meatless lasagna for...

    Today I did not swim. I made meatless lasagna for tomorrow since I have telemedicine tomorrow which will mess up my cooking time.I am beat. It feels like my legs are in one of those traps with teeth...
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    Perfectly said agate and Jeanie.

    Perfectly said agate and Jeanie.
  6. Happy 4th of July 2020

    Happy 4th of July 2020
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    I swam 1/2 mile today. Today is the first day in...

    I swam 1/2 mile today. Today is the first day in a while, that the pain has been manageable. Yesterday it was at a 7 and 8 all day. Today is at 4 to 5. No rhyme or reason . Sometimes it takes 48...
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    IVIG went well enough today. Let’s see if there is any benefit over the next day or day. No pain right now..
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    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...
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    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...
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    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...
  12. 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.
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    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,...
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    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...
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    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...
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    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...
  17. 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...
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    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...
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    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...
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    Swam 1/2 mile today. Resting...

    Swam 1/2 mile today. Resting...
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    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...
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    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
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    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...
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    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!
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    Thanks Suze. And great numbers again!

    Thanks Suze. And great numbers again!
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    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.
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    Hi Virginia!

    Hi Virginia!
  28. 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.
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    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...
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    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.
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    How are you doing today Virginia?

    How are you doing today Virginia?
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    Virginia, how are you doing today?

    Worried about you I am.
    I hope you can check in ...
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    Virginia, how are you feeling today?

    Virginia, how are you feeling today?
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    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?
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    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...
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    Let me know what you think of the movie?

    Let me know what you think of the movie?
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    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...
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    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.
    ...
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    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...
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    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...
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    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...
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    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.
  43. 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.
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    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.
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    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.
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    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.
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    Swam today in warm drizzle. Felt good

    Swam today in warm drizzle. Felt good
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    IVIG all day tomorrow, docs thurs and fri

    IVIG all day tomorrow, docs thurs and fri
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    Doc visit today soon.

    Doc visit today soon.
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    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...
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    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...
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    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...
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    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?
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    Happy Birthday AGate!!! We would be lost and...

    Happy Birthday AGate!!! We would be lost and dispersed without your leadership.
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    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?
  56. Great article and thanks for posting it agate.

    Great article and thanks for posting it agate.
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    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...
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    Rose; what is MOM

    Rose; what is MOM
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    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?
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    [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...
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    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...
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    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....
  63. 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.
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    https://pubmed.ncbi.nlm.nih.gov/11050023/

    https://pubmed.ncbi.nlm.nih.gov/11050023/
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    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...
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    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...
  67. 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.
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    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...
  69. 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”...
  70. 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
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    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...
  72. 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...
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    DId they think it was an infection, hence...

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