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    #1

    MS and MG Crisis

    Well it was bound to happen. I experienced the worst MG symptom on Saturday and then on Sunday, MS made my hands, arms, feet, and legs numb and almost paralyzed. The MG symptom was extreme excess saliva with difficulty swallowing it and getting a good breath. Also, my esophagous was making weird noises. It was also very painful.

    I called and spoke with the neuro on call Sunday who agreed with my assessment of the symptoms and asked me to call so I could come in to the office today. He has ordered 3 days of homehealth services who will give me IVIG as I am homebound taking care of Joe who has ALS. I just hope and pray I won't have any adverse reactions to the procedure here at home.

    While I was going to an infusion center last year the only problem I had was an extreme headache when they tried to give it too fast. As the home services are getting paid by the procedure and not the hours the neuro said they might want to speed it up. I need some help with the symptoms. The extreme tireness is the worst but I don't know if this will be helped as Joe's care is 24/7 and I can't get the proper rest.

    Hope everyone is doing as well as they can....

    Blessings,
    Gabriella












    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
    Tags: None
    #2
    :) Bless you Gabriella. You are in my prayers. Jeanie :)

    Comment

      #3
      I have done it both ways. I find that if they give me a whole liter of NS with the SM I have way less problems. And keep the site clean and dry.

      Good luck!!

      Comment

        #4
        The stress has to be so hard on you and making your illnesses
        raise there ugly heads. Gary had good advise.

        Feel better soon dear one.
        Love, Sally


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






        Comment

          #5
          Gabriella, you are right- it was bound to happen. I am so sorry that it did. I hope the treatment goes well.

          In the meantime, you do so very much need respite care. Can the VNA, MS, MG or ALS organizations make it so?

          Best to you and Joe,
          ANN
          There comes a time when silence is betrayal.- MLK

          Comment

            #6
            That MG crisis must have been scary, to put it mildly. Maybe the 3 days of home health services will develop into more help for you and Joe.

            Is someone in charge of coordinating your and his care--a case worker maybe? Someone who can navigate through the tricky services systems and speak on your behalf?

            I hope better days are ahead.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

            Comment

              #7
              Gabriella, this is about what I had feared would eventually happen with all that you are trying so hard to take care of. Also, the grief that comes with the ALS has got to be just a major stress by itself.

              Agate, was completely right when she said you need someone who can speak for you. You need an advocate. I have heard that there are such people, but I do not know how you find them.

              As I sit here and write this I keep trying to think how to find someone and what they do. I just know they exist. Possibly ask in all the Doctor's offices that you have contact with weather they are your Doctors or Joes. Someone just might have heard of something out there. If you had one knowledgeable person you could talk to and let them direct and help you I do think it might lessen your load just a little.

              You are constantly in my prayers - even when I cannot post.
              Virginia

              Comment

                #8
                ((((((Gabriella & Joe))))))

                I'm so sorry that you are experiencing this crisis, and I will pray that the IVIG at home will work wonders for you with no adverse effects.

                Please ask your home health nurse for HELP, in capital, bold faced, neon-sign letters. Our home health nurse has so much experience with a variety of conditions, and she knows who to call and how to get help for her patients. If your nurse doesn't have any suggestions, perhaps you could call the home health agency to determine whether they have Certified Nursing Assistants.

                Both you and Joe should qualify for assistance in your home. Your conditions should qualify you individually, as well as together.

                The trend in medical care is home care, but we need sufficient resources to provide the kind of care Joe and you need. If you can cull services from a variety of sources, you will get more coverage and options in your home care assistance.

                Does your health insurance cover home care? I'm guessing not, but I'm just reaching for anything I can think of to help you.

                Please take good care of yourself.

                You and Joe remain in my prayers.

                Love & Light,

                Rose
                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment

                  #9
                  Update

                  It has taken me a while to find time to post an update. Murphy's law is still hanging around and causing havoc with our daily life. I will condense the story....

                  The first infusion nurse had a difficult time locating a vein for the IV. She stuck me twice and the IV ran into the vein for about half the bag before it failed and my arm ballooned up. She had already told me she didn't like to have to stick anyone more than twice so $5,000 worth of Gammagard went into the garbage because I got so weak I had to go to bed and after going thru the pain of her stick I didn't want her to stick me again! She was from a home health agency.

                  The second infusion nurse was sent from the Specialty Pharmacy, Acreedo. She had experience in the ICU at Johns Hopkins treating infants and knew how to find a little vein. We were able to use the IV line for the 3rd day as well.

                  The third and final nurse was also experienced in infant care and still works at Children's Hospital in Atlanta. She was also from another home health agency. Each day a new intake form had to be filled out which required answering a multitude of questions.

                  Comparing getting the infusion at home and getting it in an infusion center is like comparing apples and oranges. I prefer the infusion center....

                  No one had ordered the liter of saline (Gary) and I ended up with a three day headache and chills after the procedure. I asked for it before we started but it never came. I also got a small amount of SoluMedrol, Tylenol, and Benydryl, prior to the infusion. It was not a good experience and only had a very small decrease in my symptoms so I'll not be asking for a repeat unless I have a major crisis.

                  Joe has a RN who comes out 1 time a week to check vitals and a CPN who gives him a shower bath. Each of them is only here for about 15 minutes. He has an appointment on Friday in the ALS Clinic and I'll give an update in my ALS post after he goes. Thanks for all your prayers.....

                  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
                    Thanks for letting us know a little of what is going on. I think about you and Joe all the time.

                    ANN
                    There comes a time when silence is betrayal.- MLK

                    Comment

                      #11
                      You and Joe have been in my thoughts too. It's a shame that medicine is so high tech now that the people in charge of it seem to be stumbling around without really knowing what they're doing.

                      I ran across this link that might be of interest. It's all of the articles on MG that have appeared in Neurology Now:

                      Only registered and activated users can see links., Click Here To Register...

                      Some are just letters from people wanting to list their local MG group or letters thanking them for writing but there are also some articles with information.
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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