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  1. Replies
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    IVIG all day tomorrow. Hoping for uneventful. ..

    IVIG all day tomorrow. Hoping for uneventful. ..
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    Today’s PT was much more grueling. ALOT of walking, for me. 90 seconds twice. And other uses of my legs...if I don’t spasm tonight, then I think its a great plan. I continued what I learned...
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    Today I swam 1/2 mile plus 50 yards in 26.5...

    Today I swam 1/2 mile plus 50 yards in 26.5 minutes. I get so stiff swimming from the knees on down, but I am stubborn :); then get ready for the day: already cooked a nice supper for the next 3...
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    Nuthatch—
    Thats awfully scary— is the family that rural? Or has the civilization encroached on hunting grounds of these wild animals?
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    Swam today 1/2 mile plus 25 yards, 25.5 minutes...

    Swam today 1/2 mile plus 25 yards, 25.5 minutes
    Did th PT exercises too.
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    Swam today 1/2 mile plus 25 yards, 25.5 minutes....

    Swam today 1/2 mile plus 25 yards, 25.5 minutes.

    DId the PT exercises later in teh day too.
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    My PT said weight gain isn;t the issue. It’s muscle mass gain that helps
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    He said to lean off of the buttocks every half...

    He said to lean off of the buttocks every half hour for at least 30 seconds to allow blood to flow to that area. Its the cutoff of blood supply that harms you.

    For example, push up on the arm rest...
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    Thats a good report. How about putting honey...

    Thats a good report.

    How about putting honey on the wound?
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    Today I swam 1/2 mile 25 minutes. I did my PT...

    Today I swam 1/2 mile 25 minutes. I did my PT exercises, which are easy to do.
    The PT is respectful, seems knowledgeable and knows to use passive PT so as to not trigger spasm
    He also told me some...
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    BT was down around 6 am today... Is there a...

    BT was down around 6 am today...
    Is there a website we can go to if BT is every down for days and days?
    Such as Neurotalk.org
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    If your head still hurts today, get in to see doc...

    If your head still hurts today, get in to see doc again, to rule out subsequent brain bleeding. Please!
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    https://www.ncbi.nlm.nih.gov/pubmed/31624742?dopt=...

    https://www.ncbi.nlm.nih.gov/pubmed/31624742?dopt=Abstract

    Research on the relationship between SPS and neuroendocrine disorders.
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    I continue to swim 1/2 mile every day around 25...

    I continue to swim 1/2 mile every day around 25 minutes since my last post.

    I had a spasm in my left ankle at 3:30 am today,... then, This morning at 6:10 am I swam 1/2 mile plus 50 extra yards in...
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    This morning at 3:30am I had a spasm in left...

    This morning at 3:30am I had a spasm in left ankle. ... then, This morning at 6:10 am I swam 1/2 mile plus 50 extra yards in 26 minutes in the rain. It’s still warm out in FLorida as TS Nestor’s...
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    Late to the party here! Laz, what can I say? You...

    Late to the party here!
    Laz, what can I say? You are living a story book life and living up to your byline, “Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh...
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    TOday I swam 1/2 mile in 25 minutes. Continue...

    TOday I swam 1/2 mile in 25 minutes.

    Continue to battle so many medical fronts...
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    IT is true for me agate. I only read the news....

    IT is true for me agate. I only read the news. Period. DH watches it when Iam not in earshot.

    Sorry to hear you are in a dark place Virginia. WIsh I could help out...
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    Ativan twice a day is helpful. I swam 1/2 mile...

    Ativan twice a day is helpful.
    I swam 1/2 mile today 29 minutes.
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    I would go for an understated Tiara, take on a...

    I would go for an understated Tiara, take on a southern belle personality, with a faint Russian Accent, and let them in on the secret that you actually are the long lost daughter of tsar Nicholas...
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    Yesterday I swam 1/2 mile 25 minutes mid morning....

    Yesterday I swam 1/2 mile 25 minutes mid morning. Went well.

    Today I swam 1/2 mile 26 minutes on ativan. Doc increased ativan to twice daily, hopefully this gives more spasticity relief. PT is...
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    While I get that they have to inspect to be sure...

    While I get that they have to inspect to be sure there are no dangerous situations like rats, etc, fire hazards that can impact the whole building— that does not excuse them from being mindful they...
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    Those HUD folks give any points for keeping a...

    Those HUD folks give any points for keeping a place good despite real disabilities?
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    That’s teh best news ever Jeanie!!!
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    Yesterday I swam 1/2 mile in 24 minutes at the...

    Yesterday I swam 1/2 mile in 24 minutes at the end of the morning instead of at sunrise since I had a doc visit early a.m. and DH was home all day to supervise the swim and had a day off of work.
    ...
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    What an absolutely beautiful story. One befitting...

    What an absolutely beautiful story. One befitting an illustrated children’s book. And the hotel name, “Wiggins” is perfect for this book/story as well. I am going to pass it on, if it’s okay with...
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    Swam 1/2 mile 24 minutes. Hurt all over before ,...

    Swam 1/2 mile 24 minutes. Hurt all over before , hurt all over after.
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    Welcome home ANN :) I agree with you about being...

    Welcome home ANN :)
    I agree with you about being home after a trip
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    Good for you Virginia re going the extra distance...

    Good for you Virginia re going the extra distance ye\sterday!

    I hear you about traveling impaired. I have found Delta to be incredibly accommodating. They stay with you all the way up to the jet...
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    Today I swam 1/2 mile in 25 minutes.

    Today I swam 1/2 mile in 25 minutes.
  31. Yes, I meant comparison of Rituximab with...

    Yes, I meant comparison of Rituximab with Ocrevus.

    And yes, Ocrevus is a sneaky Pharma maneuver around the patent running out on Rituximab.
  32. Good numbers Laz. Wish it was head to head...

    Good numbers Laz.

    Wish it was head to head with Ocrevus.
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    What’s the junk food connection?

    Today the PT admin came to sign me up for home health PT. Next step is to schedule an appointment with the PT person.
    Taking ativan each day now to keep pain...
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    Those are terrific numbers agate! Today I swam...

    Those are terrific numbers agate!

    Today I swam 15 minutes 503 yards. I got out of bed too late as I forgot to set a med alarm and thus could only swim until DH left.
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    Yes, it can improve it. BBut often doesnt. It...

    Yes, it can improve it. BBut often doesnt. It DOES take the cloud and amber looking from what you are seeing. Everything is brighter and clearer.
  36. Thread: RIP Catdancer

    by Sunshine
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    Thank you Parsi. It is a beautiful tribute to...

    Thank you Parsi. It is a beautiful tribute to Ann. She led an amazing life full of goodness, integrity and fun. Were more of us so inclined there would be peace in the world.
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    IVIG went well, without incident. Saw neuro....

    IVIG went well, without incident.

    Saw neuro. He will increase IVIG back to alternate weeks. And, he is fine with me taking an ativan pill every day. This is a huge game changer.
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    SSusan, Happy Birthday!! Of course not fasting....

    SSusan, Happy Birthday!!
    Of course not fasting. Jewish law allows one to opt out if it is a health risk. Health (i.e. choose life) supersedes rituals/commandments. May you have a meaningful...
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    Swam 1/2 mile in 25 minutes after a rushed wake...

    Swam 1/2 mile in 25 minutes after a rushed wake up and eat and meds, since high doses of Ativan yesterday at IVIG resulted in memory issues.

    IVIG was uneventful.
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    Or, do as Floridians do: Dress in layers, always...

    Or, do as Floridians do: Dress in layers, always have a raincoat in the car and a hoodie. Could by 90 outside, but 65 in overchilled businesses or homes.

    IVIG all day today....hope for a good...
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    Swam 1/2 mile 24.5 minutes. See doc Tomorrow and...

    Swam 1/2 mile 24.5 minutes. See doc Tomorrow and infusion Wed, so no swim etc for those days...still not walking.
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    Wow, ANN— fantastic :)

    Swam 1/2 mile 24.5 minutes. Will see neuro tomorrow and IVIG Wednesday, so no swim
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    I have restarted Holy Ghost by John Sandford: A...

    I have restarted Holy Ghost by John Sandford: A Virgil Flowers detective book. Not as good as his others, but still decent. I had tried to read it months ago, and couldn’t get into it: I think I was...
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    Here is the NYT article on Murdoch. Very...

    Here is the NYT article on Murdoch. Very interesting and the world makes more sense now. Trump is a minor figure in the global efforts of Murdoch et family.
    ...
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    Excellent numbers agate: you’ve been busy :)

    1/2 mile swim plus 25 yards 25 minutes.
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    1/2 mile, plus 25 yards 25 minutes

    1/2 mile, plus 25 yards 25 minutes
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    Nice to see Sam and Howie back on line :) HB to...

    Nice to see Sam and Howie back on line :) HB to Sam and Howie :)

    What a dinner ANN and Jeanie. That would be enough food to last me a week and put me into a coma! Andy is such a good son for sure....
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    Swam 1/2 mile in 25 minutes today. Looking...

    Swam 1/2 mile in 25 minutes today. Looking forward to some relief from spasticity and pain by taking a treasured Ativan today.
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    Looking forward to hearing about ANN’s dinner :) I remember those days very well: the excitement of being out and waited on, and eating delicious food.

    Today I take an ativan mid morning to...
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    SO glad to hear John can do that Laz :) You guys...

    SO glad to hear John can do that Laz :) You guys are heroic.

    Today I swam 1/2 mile in 25 minutes.
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    I swam 26 minutes 1/2 mile today despite very...

    I swam 26 minutes 1/2 mile today despite very spastic and painful legs, feet, ankles.
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    Today I swam 1/2 mile, 26 minutes. I felt brave....

    Today I swam 1/2 mile, 26 minutes. I felt brave. My shins and feet have been very spasmy and don’t even like to walk with rollator the 15 steps to the pool...
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    Success :) The uro staff phoned in Keflex. Will...

    Success :)
    The uro staff phoned in Keflex. Will start tonight.

    Now my next task is to get PT at home referral from doc
    Then get ready for Neuro appt this week
    IVIG on Wednesday.

    All in a...
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    Nice story Jeanie :)
    Today’s world is that the certified med assistants are referred to as “nurses” which I think is disrespectful to RNs...
  55. Thread: RIP Catdancer

    by Sunshine
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    Thank you so much for posting Ralph. I had much...

    Thank you so much for posting Ralph. I had much respect for Ann. She was an amazing and genuine person and it came through in her posts.

    Of course this is overwhelming. The first year or two are...
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    This is a case study just published on a woman...

    This is a case study just published on a woman with Stiff Person Syndrome.

    https://tremorjournal.org/index.php/tremor/article/view/677/2445
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    My best moment of the day is when I am submerging...

    My best moment of the day is when I am submerging under water, weightless.
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    Its not the addiction property of Ativan that is...

    Its not the addiction property of Ativan that is concerning it’s the tolerance. Doc explained that it will eventually stop working and all you are left with is an addiction, no matter how much dose...
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    It is quest diagnostics. The sample gets sent off...

    It is quest diagnostics. The sample gets sent off from docs office and doc cannot get the results for 48 to 72 hours. Since they close noon on Fridays, that’s it. I will try calling, but I doubt they...
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    I have been in serious pain except yesterday on...

    I have been in serious pain except yesterday on ativan.

    The spasticity creates painful sensations on legs.

    Had a cath yesterday as my urine culture showed contamination , unable to read it....
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    I swam 1/2 mile 26 minutes today.

    I swam 1/2 mile 26 minutes today.
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    Do deer ever charge at people unprovoked? ...

    Do deer ever charge at people unprovoked?

    Isn’t it deer that spreads Lyme Disease tic?
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    Yep. 1/2 mile, 25 minutes.

    Yep. 1/2 mile, 25 minutes.
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    then you wouldn’t like the Balm Bag.

    I have both. The bag balm works better so far. The Uddercream works well, not as well though, but its not as greasy in terms of having to wheel the wheel...
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    So glad you’re feeling well ANN!
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    Or maybe don’t do Rebif so close to the shot?
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    Thanks agate. Howie, it’s nice to hear from...

    Thanks agate.

    Howie, it’s nice to hear from you :)

    Sent in a urine culture at quest Friday, still no word on results from doc...frustrating. Its to r/o UTI. Again.
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    Today I swam 25 minutes 1/2 mile. Having awful...

    Today I swam 25 minutes 1/2 mile. Having awful spasticity problems for days now...
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    Thanks Tic Chic. No, I never heard from him. I...

    Thanks Tic Chic. No, I never heard from him. I did try to contact him through FB. Oh well. Good memory Tic Chick!
  70. I started Bag Balm. Its amazing stuff in terms of...

    I started Bag Balm. Its amazing stuff in terms of how it feels. It is healing cracks in my finger too.

    I am hoping it will do the trick. I take it you put a thin layer on the skin?
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    Keep on Moving: October 2019

    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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    Have you had your GAD65 level drawn , its a blood...

    Have you had your GAD65 level drawn , its a blood test. Sounds like me and mine are due to SPS, not to my MS...
    ITs so rare, most docs have never heard of it. My neuro was alert and said the spasms...
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    Yes, nice example: Today, I used a combo of...

    Yes, nice example:
    Today, I used a combo of mostly in wheelchair, and using rollator for brief excursions away from it to cook supper stuff. I mean brief.
    On one, by the 30 second mark, my shin...
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    1/2 mile swim today in 25 minutes. Still can’t walk...
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    I have tried MMJ topical lotion and it doesn’t help. ...
    Thanks for the concern though.
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