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Thread: OT March Chit Chat

  1. #51
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
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    IVIG tomorrow all day. Can’t 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.
    I did it for 8 years, 16 hours a month...and never got a port. I was lucky. But people who did get a port had an easier time once there is a lot of scarring.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  3. #52
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    Nuthatch, I am self diagnosing, so I really don't know for sure, but I think mine is probably lymphedema. The reason I think that is because I have tried walking barefoot to avoid anything touching my feet, always elevating my feet when sitting and being on a salt free diet. My legs remain very large as do my feet, ankles and toes no matter what I do. My Doctor gave me diuretics at one time, and I can't remember why but she was reluctant to do so and told me to take one only once in awhile. Anyway, they really didn't do any good. My ankles and toes are tight and I try to work them (like exercising them) as much as possible.

    I think mine started as edema many years ago when I was still working and before I got a MS diagnosis, but has gotten progressively worse. I cannot wear compression hose because I can't pull them on. I have small veins (not large ones) that are broken all over my legs and feet. I went to a vein clinic one time and they tried shooting something into some of them, but it made no difference. This was years ago and I remember the lady I saw said she had never seen any small broken veins as bad as mine were in my feet and ankles. So again, I am self diagnosing. It is very embarrassing. I wear only slacks now, and when I am sitting down in an environment where I have to wear shoes I try to put my feet back under me. I have not seen my normal feet and ankles in at least several years and not for long then. Back then if I was on a salt free diet and elevating my feet during the day, I might see them when I first woke up for a short time. No more.

    You have a very bad situation and you need a really GOOD Doctor who knows what they are doing since it has moved into your abdomen. Of course, the question is how to find a really good Doctor. I hope with the help of your DH that you will make the effort and try, of course, after the ultrasound of the lump. I hope your appointment is not too far away.

    That was a good article you posted regarding lymphedema. Thanks a lot. It does sound as though Sunshine does have edema.
    Virginia

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  5. #53
    Distinguished Community Member agate's Avatar
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    The cancer caused by lymphedema is quite rare, if what I've read is correct. Lymphedema is a frequent effect of cancer itself and especially of cancer treatments though.

    Here's another source for information (WebMD):

    https://www.webmd.com/breast-cancer/...how-lymphedema

    I have a perennially swollen left leg that isn't causing me much trouble otherwise. No problem getting shoes on, no pain. It's been like that for years. I was found to have mild PAD (peripheral artery disease) but so far no treatment for the leg has been needed. If it should get worse, I'm supposed to let the doctor know.



    I do have edema but it's treatable by diuretics, which I have to have if I don't want to swell up like a balloon and be very miserable. Lymphedema probably won't be helped by diuretics.


    No doctor has figured out why I have this edema. They've theorized that a brainstem lesion that I'm known to have is affecting the circulatory system in some way and causing whole-body swelling, which may or may not be the same as "gravitational edema" seen sometimes in MS.

    Often edema is related to cardiac problems but my heart is OK.
    Last edited by agate; 03-06-2019 at 01:58 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  7. #54
    Distinguished Community Member Sunshine's Avatar
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    THey did my good arm today, letting the right arm rest, hoping we can use it again. TOmorrow I do a test CT Scan where they put dye in though a vein. So, thats more abuse on the vein.

    BUT TODAY AFTER IVIG, i have Had zero pain, szero stiffeing. Its wondeful. Just rocking from the Ativan seís.

    So, itís eight the Ativan or the ivig or both that improved me. Tomorrow will tell the talke for sure. What a wonderful vacation!!!

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  9. #55
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    Glad things went well today. If it is the Ativan giving you this SE maybe you might consider having one once in awhile just in order to have a mini vacation. Would that work?
    Virginia

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  11. #56
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    Still miss Howie and Jeanie and hope they are both alright.
    Virginia

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  13. #57
    Distinguished Community Member Sunshine's Avatar
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    Yes it would work. We will try it this weekend and see if I can do things with DH outside the home :)

    I have to talk to neuro about how much before addiction begins.

    I am getting side effects, dizzy and rocking, BUT NO PAIN AND NO STIFFENING.

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  15. #58
    Distinguished Community Member agate's Avatar
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    I saw the neuro today for a routine checkup. I asked about siponimod, and we discussed Ampyra too. She is a doctor who is definitely on the same page as I am--that is, she seems to let me do whatever I want, without pushing anything, and I do appreciate that.

    She thought I might have had a seizure the other day. I mentioned the incident where I must have blacked out in the bathroom. She thought an EEG might be a good idea but allowed as how it would be normal unless there was seizure activity going on at the time of the EEG.

    So I'll go back in 6 months, and at that time she might have more info about siponimod but her opinion is that starting any new drug has greater risks if a person is older.

    She very obligingly wrote an rx for the vitamin D test, which she agreed should be done. She said that people with MS don't need to worry even if their vitamin D level goes over 100.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  17. #59
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    Back from Kentucky. Left at 11 yesterday and was home by 8 this evening. Two flights each way. The Charlotte airport on the way down and Philly on the way back had a lot of walking between terminals and I am beyond exhausted. All day Rituxan infusion tomorrow. Last night went well with 55 attendees. It was recorded and should be on the MS Foundation's YouTube channel in the near future. Next Tuesday evening in Long Island already has 92 people signed up.

    Sorry to hear about Cat's injury and Jeanie's injury and time in Rehab. Sunshine , I hope they safely do the dye for the scan without further damaging vein. I second Rose's suggestion of a port. It has been a lifesaver for me and it's been in since November of 2009 with no problems.

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  19. #60
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    Agate didn't know you were thinking of starting a new med. I will have to look siponimod up. I have heard the name, but can't remember anything about it.

    Cherie, glad you are home for a few days. 55 was a good attendance and 92 is certainly even better. Must make you feel really good about what you are doing.

    Agate, I had to pay for Vit D test this time. It was $89.00. My insurance some times pays it and other times it does not. Maybe it depends on how often I have it. I think next year when he starts to put in for labs I will just ask him to skip it and get it every other year.

    Good night everyone!
    Virginia

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