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    So, here is what is happening. I suspected a...

    So, here is what is happening.
    I suspected a UTI, so I called the urologist. The secretary must have a flag near my name, becasue when I said, “I can take any appt I can get a ride for”, she said,...
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    By all means, if you have her phone number, call....

    By all means, if you have her phone number, call. She can simply ignore the call if she doesn’t want to talk?
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    More later, or tomorrow... Worried about...

    More later, or tomorrow...

    Worried about Jeanie. We didn’t have any bad storms that would knock out power for so long....she and I get similar storms. Maybe up to 8 hours of no power if youre in a...
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    IVIG all day today.

    IVIG all day today.
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    Intrathecal Baclofen Pump: Research

    This is a study of the use of the pump vs placebo. A drawback is that it is only a handful of subjects.

    It shows the pump helps when measuring EMG activity in the muscles. But when the patient...
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    Swam 1/2 mile today and yesterday. Tomrrow is...

    Swam 1/2 mile today and yesterday. Tomrrow is IVIG all day.
    Cooked complex side dish. Resting the rest of the day.
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    Find something you like to do, maybe not...

    Find something you like to do, maybe not exercise. For example, if you are still able to walk. Document how many steps you take. Every few days, add about 5% more steps. Or google chair exercises....
  8. I really miss nuthatch. She was a wonderful part...

    I really miss nuthatch. She was a wonderful part of our community here.
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    Swam 1/2 mile today. Made walnut crust for fish...

    Swam 1/2 mile today. Made walnut crust for fish later on. REsting a bit before I make my next move.
    Started PT yesterday for muscle clenching in lower back and upper right thigh.on the back and side...
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    You have really worked hard with so many DMTs...

    You have really worked hard with so many DMTs Cruiser. The research has put fear into you about being off of them for a while, but, as many here have learned, it’s really a crap shoot. Many of us...
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    I swam 1/2 mile today. And Made a side dish for...

    I swam 1/2 mile today. And Made a side dish for dinner and then rested. Asthma has been kicking my butt, but improving.
    I will have PT shortly to help with the newer walking issue that seems to be...
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    Ocrevus sounds like it would be dangerous for...

    Ocrevus sounds like it would be dangerous for you. So I hear your concern.

    While waiting for something better, might IVIG be a good bet for you? My doctor sometimes uses it for his MS patients, it...
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    I have been swimming every day. TOday was DH’s day off. I decided that I would do no work after my swim, so we got take out. Of course, it didn’t stop me from prepping for tomorrows lasagna. But that...
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    Here is the current track:5458 As you can see,...

    Here is the current track:5458

    As you can see, much of the east coast is going to feel it. One can hope it comes ashore at Mar a Lago, but that would be too symbolic.
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    We are getting ready for the Hurricane. It is a...

    We are getting ready for the Hurricane. It is a good trial run.

    Virginia, how does one recruit a new housekeeeper? Locally we have the VNA and the Nurse On Call organization, and you can have a...
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    Thanks Jingle!!

    Thanks Jingle!!
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    I swam 1/2 mile today. Weather is warm, the calm...

    I swam 1/2 mile today. Weather is warm, the calm before the hurricane.

    Will cook, and mainly watch DH prepare the outdoors for the possible storm conditions tomorrow. Not too much to do, but I am...
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    August 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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    When you have shingles, are you allowed to...

    When you have shingles, are you allowed to takeValtrex daily for the rest of your life?
    I have HSV2 (herpes infex of genitals). Doc put me on Valtrex and kept me on it because outbreaks seem to...
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    Aha!! Case solved. We seemed to have posted on...

    Aha!! Case solved. We seemed to have posted on June, not onJuly??
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    What happened to this thread?? I see only 3 posts...

    What happened to this thread?? I see only 3 posts for month of July— I know we had way more than that

    MODS?
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    WoooHOOOOO agate——you go girl!!!! My hero!
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    IVIG was uneventful. I sat next to a fella with a...

    IVIG was uneventful. I sat next to a fella with a mask that had sharks teeth pic over the mouth area of the mask. And he had the scruffy look of a surfer dude. So, I had to ask.... yes, a surfer. Fun...
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    IVIG all day. Looks like Jeanie and I will have...

    IVIG all day.
    Looks like Jeanie and I will have some wind and rain from tropical storm this weekend. Luckily it is hitting southwest FL, not east coast.... so far.
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    Yesterday and today I swam 1/2 mile. My...

    Yesterday and today I swam 1/2 mile. My housekeeper helped me to cook the main dish and a side salad yesterday afterwards by cleaning up the mess and helping me to lift pans to pour hot liquids.
    ...
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    View Post

    Call your doctor’s office and insist that they order a three month supply each time. Even if its one of those drugs classified by FDA as “Controlled”. They can do that. I take a controlled...
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    Agate: That is truly amazing!!!! Did it impact...

    Agate: That is truly amazing!!!! Did it impact you in any Negative or Positive way to step more?

    Testing was regular mammo and Bone density, but it involves all kinds of GI changes to accomplish...
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    Close call Jeanie. Paramedics have seen...

    Close call Jeanie. Paramedics have seen EVERYTHING... not to worry about being exposed. I lost my modesty years ago when pregnant. And more recently when DH had to help me with enema related...
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    Its a nice thread.

    Its a nice thread.
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    I emailed a note to the radiology building (big...

    I emailed a note to the radiology building (big one, owned by big hospital) about my concerns. And I added that the secretary cleans the electronic pen before giving it to you to sign a pad (I still...
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    I had my annual mammogram today among a couple of...

    I had my annual mammogram today among a couple of other annual tests. The waiting room was ok re social distancing. But the room they put the women in , in gowns waiting their turn, frequently had...
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    You can ditch the pine nuts, they are very...

    You can ditch the pine nuts, they are very expensive. You won’t miss them. You could try a bit of raspberry jam whisked in the vinegarette if its the raspberries that are pricey. Or buy a bag of...
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    In a half hour, I will turn off the phone, and...

    In a half hour, I will turn off the phone, and lie down, sleep usually comes even if only 5 minutes, but even if not, lying down for 45 minutes to 90 minutes becomes crucial . Cannot function well...
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    Great bear story Howie! You’re a good writer, nice depiction of the scene.

    I got an almost bear story that doesn’t qualify, I got lots of shark stories and a shark bite, an alligator encounter but...
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    I swam 1/2 mile today and enjoyed encouraging a...

    I swam 1/2 mile today and enjoyed encouraging a frog to leave the pool and live in the pool house or outside.

    I then made roasted broccoli for the side today. I had a bag of frozen florets for...
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    Today I swam 1/2 mile. Then, I made a delicious...

    Today I swam 1/2 mile. Then, I made a delicious casserole where I sautéed chopped up fennel, then added garlic for a minute, then added small amt of white wine vinegar to sizzle, then a can of diced...
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    That is terrific Jeanie: Such perseverance.

    That is terrific Jeanie: Such perseverance.
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    Holy Mackerel! What an adventure!! And you lived...

    Holy Mackerel! What an adventure!! And you lived to tell it too! Thanks for taking the time to tell us :) Riveting!
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    Unable to swim today due to medical. Worked on...

    Unable to swim today due to medical. Worked on walking. ...which is very poor
    I walked 5 minutes on 3 occasions. There were starts and stops here and there as I made a big salad for tonight.
    There...
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    Happy Birthday Virginia! What are you reading...

    Happy Birthday Virginia!
    What are you reading for your birthday, or watching, or treating yourself with?
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    But, more typically I scan head, and then if it...

    But, more typically I scan head, and then if it looks good again, I start to read, if not, I might go to the very end to see how the plot winds up, if its that kind of book.
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    TOday I swam 1/2 mile. Yesterday I chopped up 2...

    TOday I swam 1/2 mile. Yesterday I chopped up 2 cups of onions, and chopped up 3 cooked chicken breasts today. I set all of the necessities in the cooking area.
    Today after th swim, I made...
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    And this continues. SPS has been getting worse,...

    And this continues. SPS has been getting worse, and not responding well to IVIG. Will try again this week and hoping. What a terrible disease.
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    New information on SPS

    https://pubmed.ncbi.nlm.nih.gov/20520773/
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    Jeanie, I am worried about you. You might need...

    Jeanie, I am worried about you. You might need something besides or addition t Valtrex. For example, do they ever use steroids?

    Also, after this bout, many people go on a daily Valtrex for the...
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    Swam 1/2 mile today. Then made the...

    Swam 1/2 mile today. Then made the walnut/breadcrumb/Parmesan EVOO crust for flounder will cook later today. That takes about 20 minutes from gather up stuff to clean up . Resting. These meds save my...
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    Oh JEanie, that sounds very challenging, to say...

    Oh JEanie, that sounds very challenging, to say the least. Rest when you can, move when you can.
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    What have you been reading ...Did we used to have...

    What have you been reading ...Did we used to have a book thread?

    Speaking of threads, I had been using an empty walnut can to catch the debris off my indoor aerogarden plants. It was ugly, but...
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    I swam 1/2 mile today. My back problems are...

    I swam 1/2 mile today. My back problems are really bumming me out. So I commiserate with agate...

    I made an easy dinner of a big salad, and I took frozen cooked baby shrimp,, thawed them out and...
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    There is one with Helen Mirrin as Elizabeth II ...

    There is one with Helen Mirrin as Elizabeth II weathering the crisis of Diana’s death. VERY well done. It shows her relationship with Tony Blair. I think yo will like it. IT’s called The Queen.
    ...
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    Every garden I had was susceptible to critters...

    Every garden I had was susceptible to critters and insects. I didnt use pesticides. I tried to use the organic controls, like ladybugs, parasitic wasps which helped some. But the yields on my crops...
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    Today I swam 1/2 mile. I will treat myself and...

    Today I swam 1/2 mile. I will treat myself and not make myself do anything such as cooking.

    Two technicians are coming to the house to get it ready for hurricane season. I wonder if it is scary...
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    I swam in the pool 1/2 mile today. Set up my...

    I swam in the pool 1/2 mile today. Set up my pills for half the week, made lunch, adhered to the medical regime every hour, rested. Just did what I felt like today and that is good
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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.
  59. 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...
  65. 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...
  70. 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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