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    Wishing we did not live in a cruel society. ...

    Wishing we did not live in a cruel society. Please have patience that you will be able to leave the shelter, with the aid of a Social worker of some type, after your hearing. There may be another...
  2. I took P32 for my "other" (third) disease, Polycythemia

    It's been five weeks since I went to Mayo to take p32, radioactive phosphorus. It is knocking out my platelets, hopefully not all of them (they say the slaughter slows). I have lost 3/5 of the...
  3. I took P32 for my "other" (third) disease, Polycythemia

    It's been five weeks since I went to Mayo to take p32, radioactive potassium. It is knocking out my platelets, hopefully not all of them (they say the slaughter slows). I have lost 3/5 of the...
  4. Thread: IVIG Infusions

    by Mariel
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    I have high IG-M. this is because I have...

    I have high IG-M. this is because I have monoclonal gammpathy. No one ever told me that one way they dx it is with high IGM.
    I get lost in these abbreviations, I'm not even sure that's right. ...
  5. Hi. I have other problems too, in my advanced...

    Hi. I have other problems too, in my advanced years. I was Rowena on the original MS Forum and now I am just plain Mariel,
    my original name, which I don't like a lot, but it's handy never to have...
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    And Happy New Year, and let us know about results...

    And Happy New Year, and let us know about results of the tests.

    For me life was a process of coming up negative on all tests until I came up positive on many tests. I have a dim opinion of...
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    I will be sorry to see the White Rabbit year go,...

    I will be sorry to see the White Rabbit year go, as I love rabbits. I have some who visit my backyard, but this time of year they are sparse. I do not know if they hibernate but at least they are...
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    I also need to get out of the house often. I am...

    I also need to get out of the house often. I am alone here, all alone without even a dog or cat, although occasionally a beautiful rabbit comes to eat grass outside my tinted picture window. So...
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    Thanks, Ann, I looked up diazepam and found it...

    Thanks, Ann, I looked up diazepam and found it was Valium. I can't take Valium (have paradoxical reaction) but I do take Klonopin, another benzodiazapine with a very different outcome for me.

    I...
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    Thanks, friends. Agate, PT has been helpful for...

    Thanks, friends. Agate, PT has been helpful for me too, but things are beyond that for now.
    Ann, I do take clonazapam but not as much as you do. The PA recommended a Parkinson's drug low dose to me...
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    Eruptive leg and hip jerking at night

    I have often posted the I got relief for leg jerking and spasming from magnesium, but right now, the past few weeks, this is out of control. I am wondering if anyone has taken steroids for this? ...
  12. The neurologist was not interested in my feet...

    The neurologist was not interested in my feet having good circulation, and he was not interested that I had had an MS diagnosis and a Porphyria diagnosis. He just said I should take care of my...
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    Our roads are mostly clear, Sally and Agate, so...

    Our roads are mostly clear, Sally and Agate, so the appt. is not cancelled. A friend will drive me just so I won't have to go alone in case it is icy. I had a very helpful encounter with my pcp's...
  14. Craig, I was Dr. Swank's patient, although I...

    Craig, I was Dr. Swank's patient, although I already had a dx when I went to him. He tested my blood to see if it slowed down when exposed to fat, and it did, and that was his primary diagnostic...
  15. Hello, everyone, sort of checking in, have been...

    Hello, everyone, sort of checking in, have been reading what people wrote. Too much to respond to all of it and I am very tired.
    I have a lot of different diseases like you do, Gabriella, and I...
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    Ann, I don't have daughters. I have only a son...

    Ann, I don't have daughters. I have only a son and two grandsons, and of course my daughter in law. Abby has two daughters.

    We are having snow, ice and extreme cold today, Dec. 5. I am supposed...
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    Feeling pretty down. I saw the hematologist...

    Feeling pretty down. I saw the hematologist yesterday, after having seen the neuro last week. I had an MRI and MRA. MRA was clear. MRI shows a bunch of white matter (diffuse white...
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    Gary, I also take Vitamin D to help with calcium...

    Gary, I also take Vitamin D to help with calcium absorption. Mine tested very low after I read Ted's stuff years ago, and I increased it, and my score went way up, but not up to where Ted would have...
  19. Thank you, Agate. I have read the material. I...

    Thank you, Agate. I have read the material. I may talk to the doctor about it.
  20. New article in Science about LDN, good to stop proliferation of cells

    A friend on another forum sent me information from Science magazine on use of LDN to stop proliferation of cancer cells, having been tested in ovarian and prostate cancers. This is a mystery to me,...
  21. Thread: What a Croc

    by Mariel
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    I will investigate them, as I'm always looking...

    I will investigate them, as I'm always looking for shoes that don't hurt. I have had numbness in my feet for some time, but now I have pain too due to my other disease, Polycythemia Vera. My...
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    I had a good Thanksgiving and was able to walk...

    I had a good Thanksgiving and was able to walk into my son's house, which is rather dangerous because of the stairs, and he won't put in a railing, but I hang onto the wall and place my feet...
  23. Thread: Wow

    by Mariel
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    Echoing all above! Mariel

    Echoing all above!

    Mariel
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    Hello, Sally, when you can read this! Glad you...

    Hello, Sally, when you can read this! Glad you are being taken care of! Get better.


    Mariel
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    Things have improved a little since i stopped the...

    Things have improved a little since i stopped the Hydrea, and my son exchanged computers with me so I'd have one less glarey (neither of us can figure out what the problem is with the one he took...
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    Thanks Virginia. The place I want to look at in...

    Thanks Virginia. The place I want to look at in Scottsdale is independent living. I could not afford assisted living, and I cannot
    imagine what will happen if I need it. There are "add ons" even...
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    Cherie, I do have some church contacts, and as...

    Cherie, I do have some church contacts, and as long as I can still drive there I will see them.
    One of them was assigned to come here once a week to talk to me. Often those who are
    assigned are...
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    Thanks Cherie. Traveling to Mayo is at best...

    Thanks Cherie. Traveling to Mayo is at best difficult and expensive. I would have to move there if I am going to have a regular neurologist there. My pcp has suggested a neuro in Santa Fe. That...
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    Yes, Cherie, I would like to see a neuro there. ...

    Yes, Cherie, I would like to see a neuro there. Right now everything's in chaos for me. I found out that the Santa Fe lab score was wrong again, my platelets ARE over a million. They sent my blood...
  30. Going to online forums like this one is a big...

    Going to online forums like this one is a big release to me from "disability". I can still type well, but I am having eye trouble now,
    and have to limit my time at the computer, so that's...
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    I agree that chewing your food thoroughly is...

    I agree that chewing your food thoroughly is mandatory. Then no big pieces will get stuck. My worst problem is swallowing
    pills, especially the horse pills. I have to take two horse pills,...
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    I'm chiming in in favor of the oxygen, too. ...

    I'm chiming in in favor of the oxygen, too. Primarily to give you more energy, possibly? I too know of someone who was on it
    and then went off it.
  33. Thread: The Eldery

    by Mariel
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    Thanks, Mike, from me too.

    Thanks, Mike, from me too.
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    Ikolko and Agate, thanks for the thoughts about...

    Ikolko and Agate, thanks for the thoughts about transportation. MS Society in Santa Fe never returned my call. I didn't think of the Lion's Club, because my plaints at church on Sunday brought...
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    Agate, I left a message on the RioGrande office...

    Agate, I left a message on the RioGrande office phone. It's Saturday, maybe they'll call back on Monday. I offered to pay, just said I cannot figure out transportation from here. We have no taxi...
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    I live in a small town, Agate, and we don't have...

    I live in a small town, Agate, and we don't have an MS society. I have money to pay a driver. I don't know how to find one.
    I may try church again and see if they can suggest a way to find one. ...
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    Agate, and Virginia, I used to have a handyman...

    Agate, and Virginia, I used to have a handyman who drove me, and he was a wonderful friend with whom I talked about many things. He and his wife moved to Michigan. My son does not want to have...
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    Ann, I don't think PV it an auto-immune disease. ...

    Ann, I don't think PV it an auto-immune disease. I am really confused about whether MS is auto-immune,
    as I think some cases are auto-immune and others chemically caused (chemicals causing the...
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    Going to Mayo next week for radiation

    This is not for MS. It's for Polycythemia Vera, in which I make too many red cells and
    platelets. My white cells are very slightly high, not VERY high like the others. I have
    phlebotomies for...
  40. Thread: The Eldery

    by Mariel
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    Gabriella, I see you have struggled heroically to...

    Gabriella, I see you have struggled heroically to get medical care for yourself, and two of your sons are now struggling. I am blessed with my coverage, and the blessing came primarily because I...
  41. Thread: The Eldery

    by Mariel
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    I was so moved by Terry Schiavo's death. I...

    I was so moved by Terry Schiavo's death. I thought that they should at least give her water, but I was told that would have prolonged suffering. Steve Job's death was such a contrast. He was not...
  42. Thread: The Eldery

    by Mariel
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    Thanks for good thoughts! Yes it is beautiful...

    Thanks for good thoughts!

    Yes it is beautiful here, especially when it is cool and rains have been recent, as yesterday.
  43. Echoing the above remarks, Craig. I too baffle...

    Echoing the above remarks, Craig.

    I too baffle my doctors who admit they do not know what causes my episodic blindness (ten seconds no vision, eye spasm). Which of my many diseases? Vascular? ...
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    Gabriella, so many diseases you have! Wow. ...

    Gabriella, so many diseases you have! Wow.

    I have quite a few too. In two weeks I have to go for radiation to Mayo Scottsdale, to cut back my platelets and red cells from
    Polycythemia Vera. ...
  45. Thread: The Eldery

    by Mariel
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    A friend from church, whose husband is a ranger...

    A friend from church, whose husband is a ranger at Bandelier (Indian site) said that
    it is not odd that Indian spirits came at the time of Irv's death, for all of this area was
    once Indian pueblo...
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    Parsi and Kim, I can't remember what made it go...

    Parsi and Kim, I can't remember what made it go away. Possibly I DID take more magnesium, probably I did, since I am in the habit of doing that when spasm or spasticity is intractable.

    I had...
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    Yes, it is even harder to accept help when it's...

    Yes, it is even harder to accept help when it's given grudgingly. I find I have had to ask people
    for help who didn't want to be bothered, didn't have the time, but did it as a duty. This is very...
  48. Thread: The Eldery

    by Mariel
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    Canadian MSer (Kim?) and Parsi, I appreciate so...

    Canadian MSer (Kim?) and Parsi, I appreciate so much hearing from you that what I wrote resonated with you,
    and was not just self-centered rambling. My experiences were real, but I am not sure they...
  49. Thread: The Eldery

    by Mariel
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    I want to delete the rambling statements I made...

    I want to delete the rambling statements I made here about my husband's death, but I don't see any way to do it. Will the Moderator help me, please?
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    This problem seems to be gone.

    This problem seems to be gone.
  51. Thread: The Eldery

    by Mariel
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    removed by poster

    removed by poster
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    Hope you are not lonely today, Craig. I'm lonely...

    Hope you are not lonely today, Craig. I'm lonely too, a widow. I remember days when Irv and I traveled together.
    We had a condo in Hawaii on Maui. I took my son twice to Disneyland, but that was...
  53. Thread: The Eldery

    by Mariel
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    P.S.to my comment. Two hours after Irv passed...

    P.S.to my comment. Two hours after Irv passed away, I was walking in my hall and I felt his spirit pass through me quickly and go on. I felt that he was now well, walking upright, and feeling...
  54. Also praying for successful surgery, Lady. ...

    Also praying for successful surgery, Lady.

    Medicare will be covering fewer things and already this has started.

    Mariel
  55. Thread: The Eldery

    by Mariel
    Replies
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    My husband passed away at the time I went home to...

    My husband passed away at the time I went home to pack for hospice, where he was to be transferred. They had a yellow Do Not Resuscitate sign next to his door. They HAD told me he was dying. But...
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    Craig, love you.

    Craig, love you.
  57. I think Dr. Swank's low fat diet, which helped...

    I think Dr. Swank's low fat diet, which helped some of us, is at least partially based in treating a vascular problem. His test for MS was to take some blood from the patient, put under microscope,...
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    I have not heard of spastic diplegia Cerebral...

    I have not heard of spastic diplegia Cerebral Palsy but I will look it up. So many things are inter-related. It's not as bad today.
    Thanks, funny legs.
  59. Thread: Re-Introduction

    by Mariel
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    :angel:Good to see that name again: Cat Dancer!...

    :angel:Good to see that name again: Cat Dancer!

    Mariel
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    New symptom--odd! Spasticity?

    I have not had this before. I awake with my lower leg twisted in a cramp which is painful, and it stays that way when I get up and limp to the bathroom and sit in my wheelchair for breakfast. It...
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    So lyrical, your post, Barbara. Very...

    So lyrical, your post, Barbara. Very Irish-melancholia-like. Me sad too, with husband dead two and a half years.

    Your post is a poem, Yeats would like it.

    Mariel
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    Gary, I am in the high desert, too. We have been...

    Gary, I am in the high desert, too. We have been having wonderful rains the past few days--making up in part for the drought of the Spring and Summer (remember our big fire?)

    Abby, there is a...
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    It was bad for me because I could not detox it...

    It was bad for me because I could not detox it because I also have Porphyria. On my first day of Baclofen I ran into the wall like a drunk, ran into a chest of drawers, etc. Quit, of course. ...
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    Yes, Abby, I am 30-40 miles from Santa Fe,...

    Yes, Abby, I am 30-40 miles from Santa Fe, depending on whether I am driving to the north part of town or the south part. There IS beauty here, but I miss the water of Puget Sound and Lake...
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    I see you have many diseases here

    Not just the neuro ones. I post on MS.

    I also have Porphyria and two rare myeloproliferative diseases, Polycythemia Vera and Monoclonal Gammopathy.

    You might add Myeloproliferative diseases. I...
  66. Great to hear this, Craig!:angel:

    Great to hear this, Craig!:angel:
  67. I have a metabolic disorder and I think it's a mitochondrial one

    I have POrphyria, which used to have a haven here on Braintalk, but no one came for years after the participants gunned each other down in a verbal firefight.

    Anyway, Porphyria is an "inborn...
  68. Thread: Lonely

    by Mariel
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    Praying for your pain to be better, Abby. I...

    Praying for your pain to be better, Abby. I don't know how to put up Roses. I can hardly utilize my new computer my son gave me. I would simply bomb the place and have a shattered computer if I...
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    Happy Birthday, Abby!:angel::o

    Happy Birthday, Abby!:angel::o
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    I sensed that the shadows were getting longer the...

    I sensed that the shadows were getting longer the other day, and it brought a flood of memories of Autumn when I was young. My mother and father and I and our dog lived near the University of...
  71. Thread: Plasmapheresis

    by Mariel
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    3,533

    Plasmapheresis has interested me because I have...

    Plasmapheresis has interested me because I have another disease, Polycythemia Vera, in which I have too many platelets (three times normal). I also have high red cells, but these are removed every 6...
  72. Has LDN ever been used for myeloproliferative diseases?

    I posted this on Sally's thread about LDN, but I decided to give it more exposure by posting here.
    I have Polycythemia Vera, a disease where bone marrow makes too many platelets and red cells.
    This...
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    I wonder if LDN has been used ever to treat...

    I wonder if LDN has been used ever to treat myeloproliferative syndromes. I have two of them, Polycythemia Vera (in which I had too many red cells and platelets manufactured by the bone marrow,...
  74. Thread: Welcome Back

    by Mariel
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    I don't know what to google to arrive here,...

    I don't know what to google to arrive here, usually have to go through several attempts. I guess "Braintalkcommunities" is the right one.

    This was my very first online forum, in fact, my very...
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    Hi Agate

    Made it:o:cool::o Thanks for your efforts
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