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Thread: OT April Chit Chat

  1. #171
    Distinguished Community Member agate's Avatar
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    ANN, thank you for remembering this. I'd completely forgotten that she said this. I agree that we should respect her wishes.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #172
    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :) I sent Sally an Easter card with my phone number and said I would post for her if she would call me. She has not called. Sending Julia an email would not be sending the Calvary, it would just say we were hoping to hear how Sally is. Jeanie :)

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  5. #173
    Distinguished Community Member agate's Avatar
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    She may not be well enough to do the calling.

    On another larger message board there was a post recently by someone who stated that one thing she liked about that board is that she can come and go whenever she wants and be gone for long stretches of time without anyone ever noticing. There are people who prefer not to be asked about. Maybe they don't want to feel pressured into doing more than they feel up to doing.

    I can understand that. Asking about someone isn't really pressuring but it might be perceived as pressure.

    I'm not sure what she means about sending out the Cavalry. She may indeed mean that she doesn't want her daughter contacted. Her daughter has MS and may be having difficulties of her own, and Sally may have good reasons for not wanting her to have the added responsibility of replying to us.

    We have no right to any information about Sally, really. She's been kind enough to be present here and be supportive to others here for many years.


    We don't really know much about one another's personal situations, and a call to anyone is an intrusion on that person's life.

    Since we aren't personal friends or relatives of Sally's, maybe we shouldn't inquire at this point. If the daughter had asked us to feel free to contact her, it would be different but so far as I know she hasn't said that.

    I sent her an Easter card too and have sent a couple of PMs but no reply.

    With message boards, it's really hard to figure out what's appropriate and what isn't.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  7. #174
    Distinguished Community Member Howie's Avatar
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    Cool

    I heard that guy Howie is having a hard time keeping his cats from just running wild through his house. The one named Sam seems to be the bad seed of the group. Do you think we could call Sam and see if Howie is okay?

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  9. #175
    Distinguished Community Member agate's Avatar
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    If Sam is such bad news, what makes you think that Sam would be believable?

    I vote for not calling Sam. Sadly, her rep here is a bit tarnished.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #176
    Distinguished Community Member Howie's Avatar
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    Cool

    https://www.technologyreview.com/s/6...om-the-market/

    Look at this price. If there is ever found a cure for MS with a one time injection, you can bet it would carry a similar price tag, or higher.
    Last edited by Howie; 04-21-2017 at 04:22 PM.

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  13. #177
    Distinguished Community Member Frog42's Avatar
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    And they've withdrawn it from the market, tsk tsk. How man people could manage to raise that much no matter how much they wanted to try it?


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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  15. #178
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    I would be willing to call the Nursing Home that Sally is in and not ask to talk to her or really give out any information, but just ask if they could tell me if she is still there and how she is doing. I would only do this if everyone agreed that I should. I have the name of the Nursing Home and the address. I have also been mailing cards all along. So anyone have any suggestions about this?

    About the antibiotic - I know that different ones are given for different things, but my other Doctors had been giving me Augmentin for UTIs because it did not set all my symptoms off as much. It has always worked. I have not taken an antibiotic in several years. This new Doctor would not give it today. She is extremely hard to get along with and goes right by the book. She does not treat the whole person. She just does what is in the medical text books. I picked up the other antibiotic today, but have not started it.

    About the Thyroid - Agate the two different labs do go by slightly different scales, however I am still out of limits at one lab and well within limits at the other lab. I would like a different opinion, a more independent one, but have no place to get one.

    Howie, I agree with Agate - Sam has kind of lost her credibility around here. We really can't trust her too much. Her reputation has just kind of gone to pot.
    Virginia

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  17. #179
    Distinguished Community Member Howie's Avatar
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    A little serious talk about something I have never had, a UTI. It has to be tough because every treatment for MS does so by restricting the immune system, and make it stop attacking myelin. But the reduction in immune response means it also reduces the immune response that would stop a UTI before it starts.

    A classic case of damned if you do, and damned if you don't. You have to do something about the MS, but the treatment leaves your immune system reduced in it's response to infections that normally wouldn't get a chance to take root because of the body's natural response to any infection.

    I understand it well, and I'm just glad I don't ever have to deal with that because my immune system is 110% and I take no DMT. It's that 10% I have to worry about.
    Last edited by Howie; 04-21-2017 at 07:54 PM.

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  19. #180
    Distinguished Community Member agate's Avatar
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    The disordered immune system may not be the only reason people with MS are apt to get UTIs. Many of us retain urine because our bladders aren't working right, and that pooled residual urine can be a breeding ground for bacteria. At least that's how it was explained to me once.

    Virginia, you could try calling the nursing home about Sally but my guess is that they won't give out any information because of HIPAA regulations. I vote for you to try though.

    I tried calling her at the phone number that is her phone there quite a while ago but she really doesn't want people calling her. It's too upsetting, or at least that's my impression from the way that very brief conversation went.

    I sent her an Easter card and other cards too. It's great that people are thinking of her, and it just might impress the nursing home staff. Cards and letters pouring in from well-wishers might help the staff to realize that Sally is SOMEBODY, and they ought to be on their best behavior when taking care of her.

    Howie, about that expensive drug--it's for a disease that's not just rare but very very rare. I have to wonder why they even developed the drug since most people couldn't come up with that kind of money. At least the few people who have the disease won't feel neglected now but that doesn't really help them that much, seems to me.
    Last edited by agate; 04-22-2017 at 08:20 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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