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The Verdict is In

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    #1

    The Verdict is In

    Well not only did MS zap my gallbladder it did indeed get my stomach as well. I have Severe Gasteroporisis of the Stomach. And it is caused by damage from the Vagus Nerve by MS. It is mostly found in people with Diabetes and MS.

    My MS Specialist is waiting for all the tests to be sent to him...I think they are seriously considering IVSM since MS is the underlying cause. I don't know. We are all just grasping at straws right now.

    Longterm, I will most likely have a stomach pacemaker put in. Hopefully that will help with the symptoms. The are searching for a Specialist for me. I can't eat and am nauseated 24/7. I have lost so much weight. It is likely I will never eat solid food again. Many people die from this. If I remember correctly it is a 67% 5-year survival rate.

    What the kicker is...my death certificate will state "Cause of Death, Gastroparesis". MS kills...and I am going to be exceptionally vocal about it.
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri
    Tags: None
    #2
    I'm so sorry

    What is a stomach pacemaker? Have they given you anti nausea meds? Of course they must have tried that. I hope you can eat food again. It seems like me takes all our joys away one by one. I will be praying for you and I hope you can keep your head up through this. We need you around here.
    You can't stop washing your feet just because you're afraid you'll fall in the shower.

    Comment

      #3
      OMG! Katie! How could this happen to you! Since you most likely can't take anything for nausea, peel orange oranges and sniff them. It temporarily helps, also ginger candy (both hard and soft help. The other thing that works is Ativan. It will help your dizziness too. Please know I am so sorry sweetie. I will be praying for you.
      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment

        #4
        Oh Katie, I am so sorry. I didn't know ms could cause this. You have been thru too much, I hope you can find some relief for the nausea and I pray you will be able to eat solid food again.

        Praying for you Katie.
        God Bless Us All

        Comment

          #5
          katie, I am so sorry for these continued problems. i wish that there was something that I could do to help you. I am continuing to pray for you and your health. (hugs)

          Comment

            #6
            Thank you both.

            I am on Zofran (32 mgs/day) Dissolvable and Ativan 3 mgs/day. Nausea is still there most of the time.

            I have an appointment to see one of the Motility Specialists at USF.

            A stomach pacemaker helps with the symptoms...does not help the functioning well, but if the nausea and vomiting can be controlled then a diet can be formulated to maintain nuitrition. Which will primarily be a liquid diet.

            Not sure I would allow a feeding tube unless I could be guaranteed a certain degree of a quality of life to go with it.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment

              #7
              Katie,

              I am so sorry to hear. I am glad you are finally getting answers, but wish they were different answers. I hope they do find an answer for the nauseousness, as that is a tough symptom to live with it.

              I pray you don't have to make the feeding tube decision, but would want the same as you, only if quality of life exists.
              Kathy
              DX 01/06, currently on Tysabri

              Comment

                #8
                Katie-you're living proof that MS sucks big time. You're in my thoughts and prayers. I hope that you catch a break and the outcome of all this is good. You've been the person on this forum that I've come to look forward to hearing from. You're brave and fearless, and I expect you to keep fighting! You're respected and loved here, and with all the good wishes headed your way, you should be feeling better! I certainly hope so.

                Comment

                  #9
                  Thinking of you and hoping that there is a gastro wizard out there that can help in a significant way. Would wearing sea bands from the pharmacy help with the nausea? Hugs.

                  Comment

                    #10
                    I am so sorry. I hate this miserable disease and especially what it is doing to you. Please keep us posted and know that I am sending prayers, good thoughts and strong vibes your way. Hugs, Jules
                    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                    Anonymous

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                      #11
                      Count me in too, Katie, for sending prayers and good wishes for a better outcome. Sometimes, life is SO unfair. You are a warrior, however, so keep that battling spirit going! Hugs to you
                      1st sx '89 Dx '99 w/RRMS - SP since 2010
                      Administrator Message Boards/Moderator

                      Comment

                        #12
                        Me too, Katie, I'm also praying for you. I don't think too many here that have been thrown as much as you have, but you still keep going. Boy, are you an inspiration! Please keep us posted and take care.

                        S.
                        Seattle, WA
                        Dx 05/14/10, age 55, RRMS, Now PPMS
                        Avonex 5/10-9/11; Copaxone 20, 9/11-4/13; Tecfidera 4/13-7/15; Copaxone 40, 9/15 -present

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                          #13
                          Thank-you all. I can't respond to every post but I have read all of them over and over.

                          I have not tried sea bands. I think I will try today.

                          UPDATE: I spent the day at USF yesterday with my Father. I have been fortunate to get rushed through the medical system. We got permission to use a drug that is not widely available to see if we can kick start the stomach, but won't get that for a couple weeks. The drug can cause sudden cardiac death, but that is rare.

                          Was also put on a very Non-MS Friendly Diet. And will be starting it slowly today. I will be on this diet the rest of my life...most likely. There is a chance that the GP, will flare and remit just like MS.

                          The GP trumps my MS at this point because the GP is potentially fatal, not to mention miserable. Makes some of my flares look lame. If the drug and diet don't work...a feeding tube put into my intestine is the only option before a gastric pacemaker which is a very evasive procedure.

                          My life has done another 90 degree turn. Gastroparesis as a MS Complication is devastating. But I am going to "Fight Like A Girl" and give it a shot.

                          In the end, no matter what happens, no one can say I did not try.

                          And honestly, I put the two posts out there because MS Complications are real, they are devastating, and they kill. I think alot of us think, "It won't happen to me, until it does."

                          I know of a couple other MSers on this board with MS Complications...I am hoping they educate people as well with their struggles as well. And I hope scientists, doctors and the MS Society reads these posts...because MS ain't no Tecfidera Commercial.

                          I wish I had a platform to pubically speak about this disease.
                          Katie
                          "Yep, I have MS, and it does have Me!"
                          "My MS is a Journey for One."
                          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                          Comment

                            #14
                            Originally posted by KatieAgain View Post
                            Thank-you all. I can't respond to every post but I have read all of them over and over.

                            I have not tried sea bands. I think I will try today.

                            UPDATE: I spent the day at USF yesterday with my Father. I have been fortunate to get rushed through the medical system. We got permission to use a drug that is not widely available to see if we can kick start the stomach, but won't get that for a couple weeks. The drug can cause sudden cardiac death, but that is rare.

                            Was also put on a very Non-MS Friendly Diet. And will be starting it slowly today. I will be on this diet the rest of my life...most likely. There is a chance that the GP, will flare and remit just like MS.

                            The GP trumps my MS at this point because the GP is potentially fatal, not to mention miserable. Makes some of my flares look lame. If the drug and diet don't work...a feeding tube put into my intestine is the only option before a gastric pacemaker which is a very evasive procedure.

                            My life has done another 90 degree turn. Gastroparesis as a MS Complication is devastating. But I am going to "Fight Like A Girl" and give it a shot.

                            In the end, no matter what happens, no one can say I did not try.

                            And honestly, I put the two posts out there because MS Complications are real, they are devastating, and they kill. I think alot of us think, "It won't happen to me, until it does."

                            I know of a couple other MSers on this board with MS Complications...I am hoping they educate people as well with their struggles as well. And I hope scientists, doctors and the MS Society reads these posts...because MS ain't no Tecfidera Commercial.

                            I wish I had a platform to pubically speak about this disease.
                            I wish you had a public platform, also. You express perfectly all the misery of this disease and the bravery of those who continually suffer the consequences of it. I pray you find some relief from the stomach issues you are experiencing now. Keep up the good fight!

                            Comment

                              #15
                              You Are An Inspiration

                              Katie, You are an inspiration to me. I have learned so much more about this awful disease since your posting and thought I knew a lot before. My mother died of "complications of MS". She had chronic aspiration. When she was alive there was no medicine and I don't think anyone, including her doctors, had a clue.

                              When I was dx I just thought I would end up in a wheelchair. I had no idea all the terrible things that could happen. Now I know so much more. Please keep fighting and keep posting. I admire you so much. Prayers and hugs.

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