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    #1

    Swallowing Test Tomorrow

    I've had increasing difficulty with swallowing. My neuro ordered a "modified barium swallowing test" and I will be having it done tomorrow. This has been coming and going for years but in the past 6 months has gotten worse to the point that I have to stop eating because it has become very painful.

    At times, I also have an overabundance of saliva and have to go to the sink and spit and spit for 5-10 minutes or so. I really don't even want to eat anymore just because it is painful....I have no appetite.... but I know I have to. I've been very depressed lately and hate cooking for myself or even going out to eat alone.

    Anyone else have this symptom? I know everything is not MS so it needs to be checked out and I will probably followup with a gastroenterologist. I am still on antibiotics for UTI's which have lasted for over 2 years. I had to go and get the culture and sensitivity test with a urologist on Tuesday and if it comes back clear he wants to do a cystoscope to see if he can determine what if anything he can do for the neurogenic bladder. I need a bladder transplant but I don't think they can make a bladder that works.

    Blessings,
    Gabriella
    Last edited by Gabriella7; 06-13-2014, 05:54 AM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon
    Tags: None
    #2
    I have lost 45 pounds in the last two years because of swallowing problems...

    I'm sorry you are having this frightening problem.
    I have lost loads of weight and have people saying that I look so great...even though I say that I did not try and that it was caused by MS complications.

    Anyway, it took me a while to figure out what was happening. Last summer I ended up in the hospital and that was when I first heard the term spasms applied to my esophagus. I have been drinking Ensure (not the one with a lot of sugar) since then and it has helped maintain my health.

    I have been using baclocen thinking it reduces leg cramps so might help throat cramps also. When it is really bad I use Valium which is a muscle relaxer. I have not fully discussed this with my neuro as there has been so much going that is more critical. I think my weight loss has stabilized.

    However, last week after working, my throat tightened so much that it felt as if there was no room for even water to slide down the side of what felt like a giant fist in my esophagus. Then I started throwing up but it was clear saliva that I threw up. I did not understand this or where the saliva came from. I was munching a carrot at the time so you would think I would throw up the carrot. It was frightening and painful.

    Anyway, eating foods that slide down easily and using some form of spasm medication is working...sort of.
    Linda~~~~

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

    Comment

      #3
      So sorry to hear that Gabriella. I do hope that your Doc can come up
      with a solution for you. It sounds like it could be a part stress/anxiety
      issue. Maybe my AD helps alleviate some of that problem for me now?

      I used to have a big issue with that, but seldom now, thank God
      Last edited by SalpalSally; 06-13-2014, 09:07 AM.
      Love, Sally


      "The best way out is always through". Robert Frost






      Comment

        #4
        Gabriella, I am sorry to hear of your problems swallowing. I hope there is a "fix."

        Linda - glad that you know what the problem is and have some ways of dealing w it.
        ANN
        There comes a time when silence is betrayal.- MLK

        Comment

          #5
          I'm so sorry you're having these problems, Gabriella, and Linda, that sounds like a very hard problem to deal with--and a very depressing one.

          . You absolutely have to eat to keep your strength up, so you'll be less susceptible to infection. Ensure sounds like one solution if you can swallow. I'm glad to know there are varieities with less sugar.

          Good luck with the test today, Gabriella. I hope some help will be there for you.
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

          Comment

            #6
            Well, I passed the swallowing test today. The radiologist was just looking at the swallowing part of the throat above the collar bone. The pain is more in the rest of the esophagus which will need to be seen and more testing done by a gastroenterologist. I am thankful I do not have the problem that my husband had with swallowing caused by ALS although it seemed similar. His food was not even going down the proper tube but trying to go down the windpipe each time.

            I have also lost about 30 pounds this past year. The therapist suggested I take very small bites of food and follow each bite with liquid. It has to be connected with the MS or the MG. She didn't know why I have had the problem with over abundance of saliva (which Linda has). I will call my neuro to see if there is a medication that can help. That is very scary as it feels like I am going to choke on the saliva. I've been making fruit/yogurt smoothies for a meal replacement so the Ensure with proper vitamins/minerals is a good idea as well as it slides down easy.

            When I got back home today....I had a message from the urologist's nurse which confirmed I still have an infection and he ordered more antibiotics as well as adding another test to the cystoscope scheduled on July 10th. He is out of his office for a couple of weeks. He is going ahead even though I have the infection and has ordered a renal ultrasound of my kidneys. I am glad he is finally trying to find out why I cannot get rid of an infection. Having an infection continously for 3 years has made life so hard as I am requiring 15-16 hours of rest every day.

            Blessings,
            Gabriella
            Last edited by Gabriella7; 06-13-2014, 09:07 PM.
            Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
            Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

            "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

            Comment

              #7
              :) Hi Gabriella I am sorry you are having so many problems all at the same time. I am resting a lot too as my groin and leg pain does not hurt when I lie down. I alwaya though getting old would be a picnic but it is far from that. Jeanie :)

              Comment

                #8
                I have some swallowing problems. I frequently have episodes of food or drink going into my windpipe. I underwent the swallow tests about 14 years ago.
                s
                Jendie
                I've been a member of this forum during its different incarnations since I was dx in 9/98

                Comment

                  #9
                  After 3 days of calling my neurologist office I finally got an answer this morning about the testing. I do have changes in my throat caused by the swallowing problem and they have called in Baclofen for me to try. I had a horrible episode yesterday and this morning my throat was so sore and my voice is raspy and hard to talk. I thought I was going to choke to death.

                  Trying to get the answer from the nursing staff was very difficult as they kept telling me the test results were not back so they couldn't even ask the doctor for his recommendations. They even asked me if I have a gastroenterologist I could go to. These are nurses working in the MS Center who should know that these swallowing problems can be caused by the MS or MG. I finally had to get insistent by telling them they could get the results either by fax or computer and did not have to wait for the radiologist to contact them. I had to wait for over a month for the test to be done just because they didn't schedule it when it should have been done. The testing was done last Friday.

                  Hopefully this will help.

                  Blessings,
                  Gabriella
                  Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                  Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                  "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

                  Comment

                    #10
                    Originally posted by Gabriella7 View Post
                    After 3 days of calling my neurologist office I finally got an answer this morning about the testing. I do have changes in my throat caused by the swallowing problem and they have called in Baclofen for me to try. I had a horrible episode yesterday and this morning my throat was so sore and my voice is raspy and hard to talk. I thought I was going to choke to death.

                    Trying to get the answer from the nursing staff was very difficult as they kept telling me the test results were not back so they couldn't even ask the doctor for his recommendations. They even asked me if I have a gastroenterologist I could go to. These are nurses working in the MS Center who should know that these swallowing problems can be caused by the MS or MG. I finally had to get insistent by telling them they could get the results either by fax or computer and did not have to wait for the radiologist to contact them. I had to wait for over a month for the test to be done just because they didn't schedule it when it should have been done. The testing was done last Friday.

                    Hopefully this will help.

                    Blessings,
                    Gabriella
                    The nurses at the MS Center don't know that MS or MG can cause swallowing problems? That's very disturbing.

                    Maybe they do know but they need to rule out any other possible causes.

                    Hope the Baclofen will give some relief in the meantime, while they're doing their poking around.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                    Comment

                      #11
                      Originally posted by agate View Post
                      Maybe they do know but they need to rule out any other possible causes.
                      I find it disturbing that if that was the case they couldn't have said so. Patient worry is apparently not a concern of theirs.


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

                      Comment

                        #12
                        All too many medical providers seem to be too overloaded to give much thought to how their plans and comments affect the patient.

                        They also seem to be eager to leave no stone unturned when it comes to finding anything that could possibly be going wrong with you, even before they come up with something to relieve the problem.
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                        Comment

                          #13
                          I still have to followup with a gastroenterologist since the other test just went down as far as the collarbone and the pain is lower down. I don't think worry is on their radar nor concern about the time lapse between the problem and finding an answer to the problem.

                          As far as the people who work in the medical field (whom I encounter) these days nurses, assistants, office personnel,etc.....their experience could have been working for Walmart or McDonald's.


                          Blessings,
                          Gabriella
                          Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                          Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                          "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

                          Comment

                            #14
                            I finally got an answer from the nurse yesterday. My neurologist does not want me to go to a gastroenterologist. Why? I don't know. The baclofen has not helped me yet and I am getting less and less food down each day. Tomorrow, I will have to go out and get some Ensure but really don't even feel up to leaving the house. It has put me in a deep pit of depression as everything seems to be going out of control. I will come back here if anything changes but I need to take a break for a while.

                            Blessings,
                            Gabriella
                            Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                            Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                            "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

                            Comment

                              #15
                              ((((((Gabriella))))))..Feel better soon please.
                              Love, Sally


                              "The best way out is always through". Robert Frost






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