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Thread: OT March Chit Chat

  1. #41
    Distinguished Community Member Sunshine's Avatar
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    IVIG tomorrow all day. Canít wait to do the Ativan. Theright arm vein is giving out: lots of scar tissue. This is so disappointing, but I new it could happen with the frequency of the ivig and the long 8 hrs of it each time...but still.

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  3. #42
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Sunshine)))))) ~

    You might want to consider getting a port, especially if you are going to continue to have IVIG infusions.

    Jim has a port, and it's a blessing. He has blood draws, injections for CAT scans, MRI, etc., and it's used when he's hospitalized for saline drip and meds.

    Perhaps you can chat with your infusion nurse about the benefits of having a port and what it entails.

    Hope all goes well for you tomorrow.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #43
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    Suze-Q thanks for your report. I guess I need to look up all my individual drugs, however I have been on them so long and no (or little) possibility of getting off. It made me feel some better that I was not on any that was on the first list posted and I do not take Benadryl.

    Cat, I am really sorry about that accident that happened to you today. It seems like you just can't win for loosing! I hope you catch a good break soon

    Nuthatch, I am sure you remember Cat's saga with the pressure sore, so I do hope you will be especially vigilant about that. The lymphedema is a real problem. I am having it so bad right now in same areas as you - legs, feet and toes. I think mine is already permanent. I don't know anything to do. When I am sitting I keep my feet raised. I didn't know they had Doctors that specialized in treating lymphedema. Do they have a special name for them? Please get the knot or lump checked out, the sooner the better for all of this. Sorry you are having so many problems.

    Sunshine, I hope tomorrow is a good Ivig day and hope you get lots of good energy from it.
    Virginia

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  7. #44
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    Does anyone know if there are any special shoes you can wear for lymphedema?
    Virginia

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  9. #45
    Distinguished Community Member agate's Avatar
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    There seem to be but I'm not sure which brands are the best.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #46
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Our hospital has a lymphedema/wound care center. Typically, Physical Therapists and Wound Care Nurses are the providers of care for lymphedema. It is common among patients with cancer.

    Jon's Physical Therapist specializes in lymphedema. He has taught us the following therapies: compression stockings; compression 3 layered bandages; lymphedema massage; positioning with pillows to increase elevation.

    The last time Jon's PT visited, Jon had a tiny pore weeping tons of fluid. The PT said that it wasn't lymphedema. It was just water. So, it helps to have a professional distinguish the kind of fluid you're retaining to know the best way to move that fluid.

    Some patients use the vibrating massagers that go on the calves. These are often used in hospitals to prevent blood clots.

    One thing that we learned from leg compression is that you have to have the right size and pressure to accomplish the goal. Too much will push the fluid up into the torso, which is why we had to stop. This makes Jon very ill, as he is right now.

    Perhaps you could try an internet search for lymphedema care to see what is available in your area. Or call your hospital or your GP for a referral. At least one consult could give you more information, and if you need further treatment, you'd be able to justify it with Medicare.

    When my boys were sitting in their chairs for long periods, and their legs were down, they sometimes developed dependent edema. That is something else to consider.

    Just elevating the legs isn't enough. There are right ways and wrong ways to do that. Or at least less effective ways. When elevating legs, the back and hips must also be protected.

    Tons of information on the internet about lymphedema, including YouTube videos demonstrating the massage, of which there seem to be variations.

    Healing prayers for you ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  13. #47
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    Good luck tomorrow, Sunshine.

    Get well wishes and a prayer for Jeanie.

    Nuthatch, I hope you can get your various health problems attended to. Lymphedema is a difficult problem, I know.

    And Cat, that sounds like a bad gash on your leg. I wonder why they didn’t glue it? Not kidding.

    Agate, I hope you will be able to make longer forays around the neighborhood and start up your patio soon.

    Sorry to hear that you too have lymphedema, Virginia.

    I went out via Uber to an eye appt to get a glasses RX. All went fine w that until the end when he uses a machine to take a picture of the inside of each eye. He spent extra time on the R eye. Then he showed me the picture and there’s a big shaded area. I asked what it was and he said he didn’t know. I said it looked big and he said,,”It’s hugh!” He doesn’t know what it is and his plan is to do another picture in 6-12 months. He had no intellectual curiosity.

    I think Inshould find an ophthalmologist and find out what this is or isn’t. The retina and optic nerve are fine. Oh, bother!

    ANN
    Last edited by stillstANNding; 03-05-2019 at 08:06 PM.
    There comes a time when silence is betrayal.- MLK

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  15. #48
    Distinguished Community Member agate's Avatar
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    ANN, could the shadow be one of those "artifacts"? I hope it's nothing to be concerned about.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  17. #49
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    Ann, I hope there is nothing really wrong with your eye, but you need an ophthalmologist to tell you. I always go to an ophthalmologist since I have had optic neuritis.
    Virginia

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  19. #50
    Distinguished Community Member nuthatch's Avatar
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    Thanks for all of your concern and suggestions. This whole ordeal has been difficult and frustrating to deal with.

    Saturday, when DH went in to pick up a RX that the nurse practitioner said he'd call in during my appointment Friday afternoon, he found that the pharmacy had no record of receiving it. Called doctor's office Sat. and, of course, got the exchange. A different doctor returned the call, so while DH had him on the phone, he asked what to put on the pressure sore and told him of all the over-the-counter meds we had already tried with no result. He said to use Polysporin, not Neosporin, as that actually hinders wound healing!
    I have been using Polysporin since Sat. with some improvement.

    I have been dealing with lymphedema since I was first diagnosed with MS and was still mobile (20 years). In the early years of repeated MS flairs, I was sent to physical therapy by my neurologist and was also treated by a lymphedema specialist, who taught my DH how to do MLD (manual lymph drainage).

    Even though we did the MLD religiously, the swelling got worse and worse, especially in the heat. By the time I had progressed enough to the point of needing a wheelchair, I could still stand and walk a few steps. Then one day my knees gave out while getting in the shower, resulting in two broken ankles. Because of the lymphedema in addition to the injury swelling, my ankles didn't heal correctly. I could no longer stand . . . permanently wheelchair bound, unable to even transfer.

    Lymphedema worsened and I was was brushed off by my GP until I had nasty open sores on the top of my right foot and big toe. The GP I was seeing at the time seemed to be more focused on healing the wound, but did put me on diuretics and potassium thinking that would help with the swollen ankles, toes (which by now looked like fat little sausages), and legs. Those meds made me pee buckets but did nothing for the swelling. She then added another diuretic "booster" medication, which totally dehydrated me, depleted my potassium and worsened the situation making me weak beyond weak, ending in a trip to the ER. Potasium fixed and sent home. No more diuretics for me. I have since learned that diuretics are used for edema NOT lymphedema, and long term use will actually make it worse!

    Next was a dermatologist who tried but could not heal the wound and sent me to a podiatrist. After many visits, medicated wraps, etc., he got me healed up and set me up with a lymphedema nurse.

    The lymphedema nurse came to my home every other day for weeks, gave me lymph massages followed by wrapping each toe, foot and leg all the way to the hip. She carefully measured each leg in numerous places every visit until the swelling was reduced somewhat. She helped me to purchase compression foot and leg wraps and toe caps which are like compression gloves for the toes. I have worn all of this for years now. It's been replaced several times over the years at high out of pocket expense. I was told insurance and Medicare does not cover them. GRRRRR.

    Swelling has been fairly controlled, but recently it has moved up and into abdomen. Then the lump on top of collar bone. Found in my research of lymph drainage that the legs and lower body drain through a channel/node on your left clavicle area. Arms and upper body on the right. And lymphedema can turn into CANCER. Think I'm a bit scared.

    Set up appointment for ultrasound of lump. Many more calls to be made tomorrow.

    On a happy note, today was my daughters birthday. Got to sing happy birthday to her with Tula. Such a delight!

    Sorry that this is so long. I don't explain things in depth usually, but felt I needed to now.
    I am not a doctor but it sounds like Sunshine and Virginia have plain edema, not lymphedema. I post this link so you know the difference. They are not the same.
    http://www.lymphedemablog.com/2011/0...it-lymphedema/

    Joan

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