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  1. Replies
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    We did buy an electric recliner that stands up up...

    We did buy an electric recliner that stands up up as well. It will be delivered in about 10 days. DH went and tried it out at the store when i was at IVIG and he said he thinks it will be terrific....
  2. View Post

    UPDATE:í
    I met with the doctor who is an anesthesiologist and pain management specialist. He has a very good reputation.
    He explained the process to me.

    He requires a psych eval on anyone he...
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    I swam 1/2 mile today, walked the 51 steps to the...

    I swam 1/2 mile today, walked the 51 steps to the pool stairs and back through the bathroom, and then rolling out the wet clothes to dry after I rinsed them in teh shower. I think the Klonopin is...
  4. It might work for some people with MS.I looke...

    It might work for some people with MS.I looke into it and decided I just couldnít eat that way.

    I do theSwank Diet, it may not help but it canít hurt me and it is closer to my own personal diet...
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    Hi Soul, nice to see you.How have you been doing?

    Hi Soul, nice to see you.How have you been doing?
  6. Replies
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    IVIG was uneventful. NIce to be back home. Itís a long time to wear a mask, grateful I donít have to do that everyday.
    BTW SAMS club is selling great masks 12 for $12. They are three ply, fit well,...
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    IVIG all day today

    IVIG all day today
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    Virginia, I am so sorry you were sick. Do you...

    Virginia,
    I am so sorry you were sick. Do you not like your family to know when you are sick? I know I try not to burden my adult kids about it.
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    December 2020:Keep on Moving

    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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    I too am having enough focus and memory to read....

    I too am having enough focus and memory to read. I just read a page or two. The book has to be terrific for me to do that. And I do skim, but I always used to skim over boring parts.

    I think for...
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    Great numbers agate Virginia, I am wondering...

    Great numbers agate

    Virginia, I am wondering if you are in a flare with that leg weakness?

    I swam this morning. It is due to get very cold at night and I swim at dawn, so I might have to take a...
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    My doctor sent an RN that did a sterile urine...

    My doctor sent an RN that did a sterile urine sample at my home, an ultrasound of the bladder and PT. They als said a phlebotomist can come if I need one. Most docs will do telemedicine right now due...
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    I swam this morning and it was a good swim with...

    I swam this morning and it was a good swim with less spasticity. My 3:45am allows me to walk to the pool and swim.
    My step counts were
    From last fThurs:
    Th 500
    Fri 530
    Sat 621
    Sun 654
    Mon...
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    Such good posts here. And, Rose, I hold you in my...

    Such good posts here. And, Rose, I hold you in my heart, Your losses are so devastating, and heartbreaking, that I can only think you have such love in your heart that lets you go on. While you will...
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    I decided not to cook for Thanksgiving. So, we...

    I decided not to cook for Thanksgiving. So, we are picking up a delicious meal at a local restaurant to eat at home.

    In the meantime I am feeling frustrated about setting up this Baclofen Pump...
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    What a gorgeous bird—-it looks part peacock.

    What a gorgeous bird—-it looks part peacock.
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    My local independent pharmacy delivers meds for...

    My local independent pharmacy delivers meds for free to customers. Furthermore, it is a family run business and they go out of their way to help you. And there is no impersonal menu tree. Real...
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    Great tip on teh butternut squash :)

    Great tip on teh butternut squash :)
  19. I agree! Welcome back to the crew :)

    I agree! Welcome back to the crew :)
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    Thatís a lot of walking Virginia.
    I wonder if a little bit of Baclofen or TIzanidine would help your stiff leg?
    Def you get chocolate.

    Today I swam. The rest of the day I am resting and also...
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    Dead Prius battery, and my illness

    DH drove my Prius once a week for 15 minutes to keep the battery alive.
    Alas, today teh battery is dead. It was my surfmobile.
    I doubt I will drive again: and if so, could always get another car.
    ...
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    I think she is or was on MSWorld bulletin board.

    I think she is or was on MSWorld bulletin board.
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    DAR: You could surf if you could learn how to...

    DAR:
    You could surf if you could learn how to swim

    Two things happened at the beach I surf at. There was a woman floating near us women surfing and she asked if we gave lessons. We said no, but I...
  24. DAR, I am so glad you have joined in our...

    DAR, I am so glad you have joined in our conversations , I had missed your voice, yourself....
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    DAR, at this point I use a wheelchair. My arms...

    DAR, at this point I use a wheelchair. My arms work well, so I am not in a scooter.
    Yes, I am teh swimmer and the surfer. I have not been able to surf since January and I only stood up on waves and...
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    Today I swam and I cooked dinner. I took 82...

    Today I swam and I cooked dinner.
    I took 82 steps getting ready for the swim which today was at 6:15 am. Legs are spastic but better for that first hour prior to about 7:30am. Am now in a...
  27. May the Lord Bless you and Keep you May the Lord...

    May the Lord Bless you and Keep you
    May the Lord Shine His face upon you
    May the Lord give you His greatest gift
    The Gift of Peace
  28. Replies
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    Would love the recipe for the non crust...

    Would love the recipe for the non crust Spanakopita Laz!
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    Yes, they are electric, by choice for me. DH said...

    Yes, they are electric, by choice for me. DH said the handle may be hard to handle if the SPS goes to the arm.

    Thank you all for your comments. :)
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    I have 3 different kinds of Rollators. I cannot...

    I have 3 different kinds of Rollators. I cannot barely walk at all right now, but when I do, I love them.. One is for indoors.One is for outdoors and driveways, sidewalks, one is for very bumpy...
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    Recliner for sick people

    I need a recliner that goes all the way back, almost as flat as a bed, and can come up to read etc. DH also thinks we should get one where when you want to get off the chair, it rises almost to a...
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    I vote for a UFO. Or a military exercise I...

    I vote for a UFO.
    Or a military exercise
    I once saw a UFO in about 1967. The official explanation was not realistic (Swamp gas). Many residents reported it. Perhaps it was military, but it was...
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    IVIG all day today. I will be thinking of all of...

    IVIG all day today. I will be thinking of all of you...Hoping for an uneventful infusion.
  34. Hi Parsi (waving)!

    Hi Parsi (waving)!
  35. Sticky: This is another website about SPS, and it is from...

    This is another website about SPS, and it is from NIH. It is a great place to explore even if you know a lot about SPS already. Its also helpful to give to your docs who know nothing about SPS...
  36. Sticky: https://rarediseases.org/rare-diseases/stiff-perso...

    https://rarediseases.org/rare-diseases/stiff-person-syndrome/

    This is a compendium of Rare diseases. SPS is on it and has useful information.
  37. Sticky: Useful Websites for Stiff Person Syndrome

    A very comprehensive and thoughtful website that covers so many aspects of SPS is:
    http://www.thetinman.org/

    This was put together by a person with SPS who clearly has some type of scientific...
  38. DAR, I am holding you in my heart. To endure such...

    DAR, I am holding you in my heart. To endure such traumas, words fail me, other than to say you have a strong spirit even through your heartbreak.
  39. Replies
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    Yesterday I stepped 1,000 steps. All after 4:45...

    Yesterday I stepped 1,000 steps. All after 4:45 PM until bedtime at 7:30pm. Itís very hard on my body, but my legs are too spastic to walk earlier.
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    Beautiful photos: What an idyllic area you live...

    Beautiful photos: What an idyllic area you live in. So close to and immersed in nature.
  41. Promising new MS drug may worsen the disease

    https://medicalxpress.com/news/2020-11-multiple-sclerosis-drug-worsen-disease.html
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    I swam today, then made the crust for the fish...

    I swam today, then made the crust for the fish and the salad. I am typicallly in the wc until about 4:40pm and then I relentlessly walk 1,000 steps until bedtime at 7:30pm
    I notice now that I am in...
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    ANN, that actually sounds like good news. Re...

    ANN, that actually sounds like good news.

    Re temp : all of my digital thermometers read around 96.6, but I have an old fashioned mercury thermometer that typically reads 97-98.6 F. And my infusion...
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    Yes, rub sam...nope, reschedule. I really hope...

    Yes, rub sam...nope, reschedule.

    I really hope this pump helps and doesnt cause infection etc. Its scary in many respects. But its also very scary to have this disease progression. The squeezing...
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    I will see the doc in one week for initial...

    I will see the doc in one week for initial interview and eval. It was daunting getting all the records together and filling out my over 30 meds sheets. But it is all complete. I bought a transport...
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    https://onlinelibrary.wiley.com/doi/full/10.1002/a...

    https://onlinelibrary.wiley.com/doi/full/10.1002/acn3.51181

    I did not know that Inderal is used for SPS.
  47. Similarities between McCardle Disease and Stiff Person Syndrome: Case report

    https://myneuronews.com/blog/2020/11/11/mcardle-disease-vs-stiff-person-syndrome-a-case-report-highlighting-the-similarities-between-two-rare-and-distinct-disorders/
  48. Replies
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    Today DH took me to the store and we got an...

    Today DH took me to the store and we got an aluminum transport chair that folds up and th foot rests can be detached. Well under 20 lbs. Now women can take me doc appts.

    Then he took me to the...
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    View Post

    If you donít have a strap to stretch your hamstring, you can use a large towel. My PT taught me that.
  50. That is so very very cool!!!! Dancing too! It is...

    That is so very very cool!!!! Dancing too! It is like VE Day after WWII. Absent the ticker tape!

    My relative in ATlanta said people were honking horns all over the place!
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    A+ agate!!!

    A+ agate!!!
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    So far, I see cats and squirrels.

    So far, I see cats and squirrels.
  53. Replies
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    Yes, there are three days in a week where you go...

    Yes, there are three days in a week where you go and they do a lumbar puncture and put an amount of Baclofren in the spinal area and see if it helps. Each day they put a little more to find the...
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    I have been accepted by the doctor to try the...

    I have been accepted by the doctor to try the baclofen pump. My first appointment is in two weeks to be assessed by the PA and the doc. Assuming that then they will tell me the process.

    Deepest...
  55. Welcome back DAR. I love your byline. I am...

    Welcome back DAR.

    I love your byline.

    I am so sorry to hear about your sister. I totally get not being able to post when you are grief stricken or traumatized.
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    This makes me feel so sad for Jeanie. I have no...

    This makes me feel so sad for Jeanie. I have no answers, just please send her my love and care for her. It sounds like maybe she is being kept in the dark about the considerations re surgery?

    I am...
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    View Post

    Hello thereó- I am only in my w/c this morning. Hopeful later today will be better. But I did cook a lovely dinner for me and DH. I figure I will finish cleaning it up after my mid day rest. If not,...
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    The news isnít great this morning. ... watchful waiting. Wha has a happened to our nation?
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    Thank you Rose and ANN. Today I swam without...

    Thank you Rose and ANN.
    Today I swam without the usual spasticity and I had taken Klonopin 2 hours prior rather than ativan 90 minutes prior. Could be accident.
    The cover is now on the pool. DH...
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    Tomorrow, I will start Klonopin, gradually ease...

    Tomorrow, I will start Klonopin, gradually ease it in, and ease out ativan. Klonopin has a longer half life and May work better at tamping down spasticity. If so, I will be able to swim normally and...
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    I am being referred for a baclofen pump by the...

    I am being referred for a baclofen pump by the neuro to the anesthesiologist and pain mgmt doc. I donít know yet how long it will take to get in. But I can blog the experience here.
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    Itís not just effort, its the disease, some days one cannot walk at all, lucky to sit up, other days, plenty of walking.
  63. Replies
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    Sorry Laz. I am still incredibly amazed at how...

    Sorry Laz. I am still incredibly amazed at how much pluck you have, you go way beyond what most of us would de: Perseverent. Heroic.
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    Today I have not yet done enough steps. So far...

    Today I have not yet done enough steps. So far 374. I aim for 1,000 because I like how the app throws green confetti at the number. Its a graph where under 1,000 is orange, and under about 500 is...
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    November 2020: Keep on Moving

    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...
  66. Replies
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    Today I swam 27 minutes. Tricky with spasticity...

    Today I swam 27 minutes. Tricky with spasticity
    Yesterday I walked 1100 steps, mostly after 2pm due to meds.
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    I wonder if they ruled out CIDP (Chronic...

    I wonder if they ruled out CIDP (Chronic Demyelinating Idiopathic Polyneuropathy).
  68. IT might take time to get in to the the doc. And...

    IT might take time to get in to the the doc. And there are reasons I may not be a candidate . Waiting, waiting.
  69. Replies
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    This man might have a milder version of SPS....

    This man might have a milder version of SPS. Afteral, I was surfing until the SPS worsened.
  70. I posted on a closed SPS Facebook page about the...

    I posted on a closed SPS Facebook page about the pump. The horror stories came out of course. But they will give me good questions to be armed with when I am evaluated.

    For example, having...
  71. Neuro visit and Intrathecal Baclofen Pump

    The doctor agreed with me that I am getting worse with spasticity and that the high doses of Baclofen cause such miserable size effects and the drugs managing the side effects have side effects of...
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    This morning I swam. I now swim differently due...

    This morning I swam. I now swim differently due to SPS creating spasticity in my feet and shins. I swim freestyle for a bit until the feet act up, then I swim breast stroke without moving my legs or...
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    IVIG and Stiff Person Syndrome

    https://www.pharmacytimes.com/publications/specialty-pharmacy-times/2020/October2020/patient-considerations-when-approaching-immunoglobulin-treatment
  74. Replies
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    I swam today. After the shower, I had a spasm...

    I swam today. After the shower, I had a spasm putting on my sock. So I rested a while, then I made the crust for the fish (easy). Now I am resting some more. Just took my scheduled spasm meds and am...
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    When my MIL was in a skilled nursing facility...

    When my MIL was in a skilled nursing facility after a car accident, and she was so cold, I got into bed with her and warmed her up. Blankets can only go just so far. Body warmth, or an electric...
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