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  1. Replies
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    The company called me about IVIG at home and said...

    The company called me about IVIG at home and said they will get back to me tomorrow about the financials and scheduling the RN. Neuro has arranged all of this. I see him Tuesday next week. Tomorrow I...
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    Today was an early morning appt with GI who...

    Today was an early morning appt with GI who manages the side effects of the crippling muscle relaxers, so I skipped swimming

    Tomorrow is an early morning appointment with the Urologist who may be...
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    So glad you are posting so much again Jeanie. ...

    So glad you are posting so much again Jeanie.
    That PT issue sounds very frustrating!
  4. Good luck Cat, it sounds very complex.

    Good luck Cat, it sounds very complex.
  5. Thank you Catdancer: I appreciate your feedback.

    Thank you Catdancer: I appreciate your feedback.
  6. I wish they would say,”I don’t know what’s going...

    I wish they would say,”I don’t know what’s going on with you, but we will work together to figure this puzzle out and come up with a treatment plan. Some neurological problems are so complex with...
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    Spoke with my neuro office. They have a line on a...

    Spoke with my neuro office. They have a line on a national home health service that does a lot of IVIG at home. It looks like I might actually be able to continue on IVIG soon...worried about doing...
  8. View Post

    Am behind on this thread—

    The anesthesia Cystoscopy showed a huge bladder, a stricture in the urethra which he fixed, and no evidence of Interstitial Cystitis.

    The Urodynamic study was done...
  9. Yes, it is the doctors way of masking their...

    Yes, it is the doctors way of masking their feelings that its the patients fault they are sick. If they would just not be so crazy, these problems would go away.
  10. Replies
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    My eldest will be here for much of the weekend,...

    My eldest will be here for much of the weekend, So I might not be posting much. I am ok. My hearing came back after my right ear stopped hearing for 12 hours yesterday and all night until 3 am.
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    That is just part of the problem Home health care...

    That is just part of the problem Home health care is able to get the Gammaguard. It has to do with how it is ordered.

    And also, many more dx are using IVIG now for off label treatment.

    And...
  12. View Post

    Functional, means that the neuro symptoms are caused by psych problems.

    Here is an interesting article that shows that there are actual biological pathology in the brain of those dxd as FND...
    ...
  13. This is a new limited study on Functional...

    This is a new limited study on Functional Neurological Disorder (formerly called names such as Hysteria, Conversion disorder etc— i.e. that the patient’s neuro symptoms are caused by psych problems)....
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    Thank you so much Rose for all this good...

    Thank you so much Rose for all this good information.
    It is a national shortage that started last year.
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    800 yards in 23minutes.

    800 yards in 23minutes.
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    Nice job ANN, and, it sounds like a fun day :)

    Nice job ANN, and, it sounds like a fun day :)
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    Terrific opinion piece on MMJ written by an...

    Terrific opinion piece on MMJ written by an Evangelical Pastor. It should be required reading for all of the so called Christian ministers who have blinders on with respect to the use of MMJ to heal...
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    Fantastic opinion piece written by an Evangelical...

    Fantastic opinion piece written by an Evangelical minister on the use of MMJ:
    ...
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    Yesterday I swam 800 yards in 22 minutes...hope...

    Yesterday I swam 800 yards in 22 minutes...hope to swim again today...
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    Someone said that the HH orders from a pharmacy...

    Someone said that the HH orders from a pharmacy that has the ability to scour all the pharmacies nationally and to stockpile it. That hospitals don’t stock up on that...how can that be?
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    Oh HWO— I can hear how scary and overwhelming this all is. I wish I had a magic idea, of what to do or ask...I am glad you will see an ALSspecialist: If they can rule that out, that goes a long, long...
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    Neuro messaged me last night (man he works late)...

    Neuro messaged me last night (man he works late) and said it would be IV at home, not subcutaneous infusion. I guess that means an RN would be here all day?

    And, how could it be that a home health...
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    https://melodyreports.com/immunoglobulins-market-i...

    https://melodyreports.com/immunoglobulins-market-is-expected-to-clock-a-notable-7-2-cagr-during-2018-2026/2931/
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    https://melodyreports.com/immunoglobulins-market-i...

    https://melodyreports.com/immunoglobulins-market-is-expected-to-clock-a-notable-7-2-cagr-during-2018-2026/2931/
  25. Thats interesting Virginia! I wish I could recall...

    Thats interesting Virginia! I wish I could recall when I stopped estrogen, whether it was right before my first MS attack.
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    TOday I swam 746 or something like that yards in...

    TOday I swam 746 or something like that yards in 22 minutes. Most of my time now is in the wheelchair. Short excursions in the rollator...seeing neuro in 12 days for quarterly.

    He is trying to...
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    THats a great looking ladder

    THats a great looking ladder
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    THis is so well said. This is me now with SPS...

    THis is so well said.
    This is me now with SPS without an ability to work. I am a total zombie. And its lonely and painful...
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    Today I swam 736 yards in 22 minutes. So far so...

    Today I swam 736 yards in 22 minutes. So far so good....
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    Can you post a link to that Howie?

    Can you post a link to that Howie?
  31. View Post

    I don’t know. Good that the researcher is thinking about this. But, it just doesnt seem correct. The Yale prof of Neurology echoes my sentiment.

    Other things come along with women of few or no...
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    TY Laz. How awful for you.

    TY Laz. How awful for you.
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    For those doing well, avoid FT. However, for...

    For those doing well, avoid FT. However, for those doing poorly, the odds are still very low that this kind of thing would happen , and its worth the risk, IMO. But go into it knowing there is a...
  34. Functional Neurological Disorder vs Stiff Person Syndrome

    This is an article about a teen who looked like he has SPS. He went up to Mayo who undiagnosed him and said he has Functional Neurological Disorder. They put him in an intensive program of Cog...
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    I wonder why the home health nurse can get the...

    I wonder why the home health nurse can get the liquid, but not the hospital. Its not a done deal yet.Doc said to wait while he Meets them.

    As long as its safe, and they have a way of handling it...
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    Do hire it out agate. My uncle, a tall strapping...

    Do hire it out agate. My uncle, a tall strapping guy, fell off a ladder at age 65, flat on his back. No one was home. It was hours of laying there until he was able to rise up. He was lucky. Could’ve...
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    yesterday and today I swam 800 yards in 22...

    yesterday and today I swam 800 yards in 22 minutes. Felt good...
    Before the Ativan, on the really bad stiff legs.

    Today I took Ativan at 10 am. DH took me to look at the ocean for 15 minutes. Its...
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    yesterday and today I swam 800 yards in 22...

    yesterday and today I swam 800 yards in 22 minutes. Felt good...
    Before the Ativan, on the really bad stiff legs.

    Today I took Ativan at 10 am. DH took me to look at the ocean for 15 minutes. Its...
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    As soon as the safety issue works out, I am on it...

    As soon as the safety issue works out, I am on it for DIY.
    I prefer to do it in a GI office where they plant a capsule of FT inside the gut...that seems less scary. I would try it. This SPS is no...
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    Very sweet funnylegs. The issue is very complex,...

    Very sweet funnylegs. The issue is very complex, true shortages, shortages due to Pharma wanting more profit and slowing production, more people using ivig off label than ever before and more using...
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    Jeanie you are amazing!! Great job getting back...

    Jeanie you are amazing!! Great job getting back your life! So happy t hear this!
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    Re trolling Bots, agate: The SPS forum has far...

    Re trolling Bots, agate:
    The SPS forum has far less people viewing of course , as its a very rare disease. I notice that when I post something new, the count goes up.
    And, when I posted the link...
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    Again, this is correlational research, not...

    Again, this is correlational research, not causation... and it may be a spurious correlation. Example, it might be that higher rates of Csection are associated with an unknown factor that is more...
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    TY agate. Yes, I saw it in the news feed. And...

    TY agate. Yes, I saw it in the news feed. And showed it to DH and to my PCP in yesterdays visit,

    He has had many patients with FT for C diff that came along with other complex medical diagnoses....
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    Laz, ask for the STiff Person Syndrome blood...

    Laz, ask for the STiff Person Syndrome blood tests work up. Specifically, ask for the GAD65 test and the antiphysin blood test. If you google the diagnosis, you will see the blood tests. The rest of...
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    It could be. I also use it for Common Variable...

    It could be. I also use it for Common Variable Immune Deficiency. WIthout it, I am susceptible to infection. Before IVIG was constantly getting bronchitis and sinus infections—and pneumonia twice......
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    https://www.erienewsnow.com/story/40654673/local-t...

    https://www.erienewsnow.com/story/40654673/local-teen-battling-rare-disease-graduates-from-high-school
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    The center called me to cancel my IVIG next week due to a national shortage of IVIG. They do not know when they will be able to get more. My reading online is that the shortage is expected throughout...
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    Shortage of IVIG

    My infusion center called and cancelled my next IVIG next week, indefinitely due to the national shortage of Gammaguard. This is scary and frustrating.
  50. View Post

    Cat’s home!
  51. Replies
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    So, I tried to reduce Baclofen to 80mg daily from...

    So, I tried to reduce Baclofen to 80mg daily from 85mg and all day the legs were stiffened yesterday....I don’t know if its affiliated with the reduction of Baclofen. I liked the less side effects,...
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    So, I tried to reduce Baclofen to 80mg daily from...

    So, I tried to reduce Baclofen to 80mg daily from 85mg and all day the legs were stiffened. I don’t know if its affiliated with the reduction of Baclofen. I liked the less side effects, not dizzy,...
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    Those are terrific prices agate! So sad to see...

    Those are terrific prices agate! So sad to see the pig feet. Having had two pet backyard pigs on my backyard “farm” with goats and chickens, I can tell you they are sentient and intelligent...
  54. What a wonderful story Laz! Thank you so much for...

    What a wonderful story Laz! Thank you so much for sharing it with us. ... memorable :)
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    Today I swam 22 minutes 720 yards on a reduced...

    Today I swam 22 minutes 720 yards on a reduced Dose of Baclofen to 80mg daily...
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    Agate, you are getting stronger and stronger. But...

    Agate, you are getting stronger and stronger. But Ladders? Even well people fall off of them as they age....

    Bravo for your determination.

    Today I swam 22 minutes 720 yards on a reduced Dose of...
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    I swam 746 yards in 21 minutes, then got...

    I swam 746 yards in 21 minutes, then got groceries.

    SPS seems to be worsening...
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    Swam 746 yards in 21 minutes, groceries, resting.

    Swam 746 yards in 21 minutes, groceries, resting.
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    View Post

    Adorable picture of Tula Nuthatch :)

    Virginia— I wouldn’t want to do that either. However, for different reasons.

    But to tell yourself you would have to shop to update your look etc, is to put...
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    The OTC CBD is from the hemp plant and thus legal...

    The OTC CBD is from the hemp plant and thus legal across America. It has trace THC in it, negligible. If he buys the Cannabis CBD tell him to get the highest CBD to THC ratio. From the company...
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    I like them a lot. I should’ve put them every where, not just the bathrooms, so if i tripped I could grab them. Or to pull self in the wheelchair faster

    I got the pinged smaller diameter: they...
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    Last night I cut back Baclofen by 5mg per doctors...

    Last night I cut back Baclofen by 5mg per doctors encouragement, to see if spasms still under control and side effects lessen. So I cut 2 min off swim today.
    I swam 22 minutes 703 yards. So far so...
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    Last night I cut back Baclofen by 5mg per doctors...

    Last night I cut back Baclofen by 5mg per doctors encouragement, to see if spasms still under control and side effects lessen. So I cut 2 min off swim today.
    I swam 22 minutes 703 yards. So far so...
  64. Thread: Politics

    by Sunshine
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    244,159

    SHS will go down in history as a sycophant and...

    SHS will go down in history as a sycophant and enabler. She has sold her soul to the devil for her moment of fame. Such a shame.

    Like so many of Trumps associates, she has sullied her prior good...
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    Check out the MMJ thread I started a while back....

    Check out the MMJ thread I started a while back.
    Most CBD is from the hemp plant and is unregulated: you dont know what’s in it. And, in general is less effective than the Cannibis plant CBD, as it...
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    Jeanie, you are making so much progress. ......

    Jeanie, you are making so much progress. ...
    Allay my fears: This year you will batten down the hatches with Andy if a hurricane approaches, right Jeanie?
    You have such grit.
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    View Post

    It’s terrific, very liveable :) and beautiful
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    https://www.ksat.com/news/new-therapy-working-for-...

    https://www.ksat.com/news/new-therapy-working-for-safd-firefighter-battling-rare-stiff-person-syndrome
  69. Replies
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    2 sec light spasm lateral leg 3 am Swam 22...

    2 sec light spasm lateral leg 3 am
    Swam 22 minutes, 800 yards.
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    Swam 800 yards in 22 minutes. DId fine..

    Swam 800 yards in 22 minutes. DId fine..
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    Terrific Jeanie! Are you able to do the routine...

    Terrific Jeanie!
    Are you able to do the routine without them present?
  72. Replies
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    IVIG went well. No spasms. The 3 ativans also got...

    IVIG went well. No spasms. The 3 ativans also got rid of all my pain and I walked nearly normally.

    Today, the day after IVIG I am still walking better,walk 60 steps without dying to sit down.after...
  73. Thread: Politics

    by Sunshine
    Replies
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    244,159

    What he is doing is treasonous. If a dem pres did...

    What he is doing is treasonous. If a dem pres did this, the Republicans would be initiating impeachment proceedings. and, I hope at least, enough Dems would go on board to facilitate it.
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    Start where you are. Right now, start with the...

    Start where you are.
    Right now, start with the breathing. Get the anxiety piece under control. Here is a meditation I want you to try by Tara Brach. It is a 4 min meditation. Get something you can...
  75. Thread: Bird Watching

    by Sunshine
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    Surfing did that (does that) for me when I was...

    Surfing did that (does that) for me when I was well. Time dilated, and I could notice every detail and nuance at the beach and in the water. The spray of water over my friends head, the bird,...
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