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  • KatieAgain
    replied
    Thanks everyone

    Your words are comforting.

    Marti-I am glad you found this thread helpful. MS is a sneaky disease.

    Lisa-If and when I get a feeding tube, it can't go into the stomach because I will vomit the meal. Has to go into the small intestine. A J-Tube I think they call it. Darlin' you have been through so much too...I hope you are hanging in there.

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  • 22cyclist
    replied
    Katie, a feeding tube might not be a bad idea. You can just get a peg tube where you open up the button and connect the tube directly to your stomach. This may be easier to digest with the gastroperises. I feel for you. Lisa

    Leave a comment:


  • marti
    replied
    Originally posted by KatieAgain View Post
    It amazes me that with all the information out there people still dont grasp the seriousness of this disease.

    Recently, I underwent Gallbladder Removal Surgery because of going into complete Gallbladder Failure. Not from stones or sludge mind you, but because of MS.

    Now it looks like the same lesion might have gotten my stomach too. I am loosing weight by the bucketloads, and I can't eat. It is possible I will need a feeding tube. All caused by MS.

    Anyone else out there with unexpected "complications" from MS? Has something funky went horribly wrong?


    This post has become more and more important to me. I'm one of those people who didn't grasp the seriousness of MS, but have learned not to take it for granted anymore. I've heard of people dying from the complications of MS ( my uncle was one of them ) but never really put it together. You all have taught me a lot with this one post. I'm beginning to understand that a lot of my problems and excess illnesses are probably complicated by my MS. It doesn't help much to just know that. I need to know how to control them.

    I am sick every day in one way or another. I keep trying to find the source of all my problems and have seen one specialist after another. So maybe my MS is really the cause of all of my unwellness. And yes, these things were all unexpected ( by me ). I'm also learning that things change as we get older and some of those things begin with MS. Thanks for starting this. I'm so interested in hearing from more people on this subject.

    Leave a comment:


  • palmtree
    replied
    Oh Katie darlin' you have had so much in the past 2 years. Now this! You are always so wise and calm about helping others. I hope and prey you find an answer to this. Maybe steroids could be the answer. I don't know.

    My latest is a set chronic UTIs and a discovery that I have advanced kidney disease. I just shake my head and say, 'what next?'.

    Keep us posted.

    Leave a comment:


  • loopey
    replied
    I've lost 50 pounds

    Hi Katie,
    I have followed your ongoing saga and have nothing but good wishes and prayers for you! I have lost 50 pounds in the past few years and I am quite thin now. I, too, just had surgery and am waiting for the results of the pathology to see if it was ovarian cancer. I don't think so as I have had CT scans and ultrasounds and so many other tests I can't even name them all. Anyway, there is no other reason I can come up with for the weight loss now besides the Ms so I just have to see i can force myself to eat more. But usually it makes me sick.

    A feeding tube would be awful and I really pray you can avoid that. Again, I am praying for you to have better days ahead.

    Leave a comment:


  • marti
    replied
    Originally posted by KatieAgain View Post
    Appreciate the prayers...I need them. I am trying to get enough calories in my system so I stop losing weight.

    When I lost all that weight ( from Gastritis ) I ate whatever I could, whenever I could. Lots of ice cream, cookies, potatoes, chicken, protein. It was a lousy diet, but eventually I got back up to 90 lbs. I still eat the same way. Just have to figure out the triggers that set off the pain ( gerd ). I didn't follow all the suggestions I got on the gastritis board, but kind of went at my own pace and likes. If it went down smoothly I ate it. Keep at it.

    Leave a comment:


  • KatieAgain
    replied
    Originally posted by Tia1 View Post
    Katie, I'm sorry that you are having so much trouble and will continue to pray that things settle down for you.
    Appreciate the prayers...I need them. I am trying to get enough calories in my system so I stop losing weight.

    Leave a comment:


  • KatieAgain
    replied
    Originally posted by marti View Post
    I am assuming that our doctors would tell us if they found a lesion that could potentially cause some serious problems right? Or is this another thing WE have to take charge of and be proactive in researching these things?
    No...you would assume wrong.

    I landed in the ER a couple years ago with exceptionally bad vitals. Did not know where it was all coming from. The on-call Neuro started connecting the dots from old MRIs and found two very suspicious areas. They put me in the tube and confirmed it.

    Connecting the dots is a time consuming thing...and there is nothing you can do about it.

    I am glad I did not know about my Gallbladder or Stomach beforehand...too much stress. Right now...I am just trying to remain as positive as I can.

    I just started this thread to see what kind of health issues popped up because of MS from the population here. I personally know MSers with pacemakers and breathing tubes.

    Leave a comment:


  • marti
    replied
    Originally posted by KatieAgain View Post
    Every part of the brain is responsible for specific functions of the body. So if you have a stroke or a bullet wound or in our case a lesion ... it depends on what parts of the brain was affected and doctors can identify what kind of deficits one might have.

    There used to be a really nice chart that broke it down nicely...have not seen it in awhile.

    I am assuming that our doctors would tell us if they found a lesion that could potentially cause some serious problems right? Or is this another thing WE have to take charge of and be proactive in researching these things?

    Leave a comment:


  • Tia1
    replied
    Katie, I'm sorry that you are having so much trouble and will continue to pray that things settle down for you.

    Leave a comment:


  • KatieAgain
    replied
    Originally posted by marti View Post
    How do they identify lesions to any specific organ?
    Every part of the brain is responsible for specific functions of the body. So if you have a stroke or a bullet wound or in our case a lesion ... it depends on what parts of the brain was affected and doctors can identify what kind of deficits one might have.

    There used to be a really nice chart that broke it down nicely...have not seen it in awhile.

    Leave a comment:


  • marti
    replied
    Originally posted by KatieAgain View Post
    I have had a lesion identified that led to my heart. I too would pursue with the Neuro.

    Good Luck to you too.


    How do they identify lesions to any specific organ?

    Leave a comment:


  • KatieAgain
    replied
    Originally posted by BadAttitude View Post
    Hi Katie.

    I clicked on your profile under the "About Me" tab as directed by site staff, but your email is not shown on the screen. Site staff assures me that is where I am supposed to find this information, and since you say it is there, I must conclude that gremlins stole it.

    Check my profile for the email I added today and perhaps we can bypass the site glitches.
    The gremlins put it back! I sent you an email and I hope you got it.

    Leave a comment:


  • KatieAgain
    replied
    Originally posted by Waydwnsouth1 View Post
    Katie I'm sorry you're having these problems. I ended up in the hospital a couple weeks ago for 4 days having problems breathing. The Pulmonologist I see said he doesn't believe it is caused by my MS but I'm starting to wonder. My breathing will get better then the next morning I'm struggling to breath again.

    I never know what to expect. This can be a scary thing. Waking up and gasping for air. I get to my Nebulizer to take a breathing treating as fast as I can. However, this morning it didn't help as much as it usually does.

    I'm beginning to think this is a as related. If this keeps up I'm going to E-mail my Neuro with the VA and get in to see her.

    Good Luck to you Katie!
    I have had a lesion identified that led to my heart. I too would pursue with the Neuro.

    Good Luck to you too.

    Leave a comment:


  • Waydwnsouth1
    replied
    Katie I'm sorry you're having these problems. I ended up in the hospital a couple weeks ago for 4 days having problems breathing. The Pulmonologist I see said he doesn't believe it is caused by my MS but I'm starting to wonder. My breathing will get better then the next morning I'm struggling to breath again.

    I never know what to expect. This can be a scary thing. Waking up and gasping for air. I get to my Nebulizer to take a breathing treating as fast as I can. However, this morning it didn't help as much as it usually does.

    I'm beginning to think this is a as related. If this keeps up I'm going to E-mail my Neuro with the VA and get in to see her.

    Good Luck to you Katie!

    Leave a comment:

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