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    #1

    MonSter "Hug"

    Does anyone here have this symptom when you are in a "flare". I have had it in the past but never to the extent that I am having it now. What do you take in the way of medications or do you have any suggestions for relief until it decides to release me from it's grip?

    My neuro wanted me to be seen in the center today but, they called and said the earliest I could be seen by the NP would be on Wednesday.

    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
    Tags: None
    #2
    Gabriella, I haven't had the MS hug but I've read some descriptions of it, and it sounds like a spasm. Have you tried any of the anti-spasmodics?

    The only one I've tried is Soma (carisoprodol). It works sometimes, and sometimes it doesn't. Tizanidine was also prescribed for me but I never took it. I'm really reluctant to add new meds.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

    Comment

      #3
      I've been getting the bear hug since my first exascerbation 16 years ago.
      Baclofen gave me a rash so I have been taking klonopin the whole time.

      The severity of hugs and spasms wax and wave.
      Somehow i just live with it in a pain scale of 1 to 7, seven making anyone near me panick 8>).
      Anything for theatre.

      Perhaps when much of your life chaos is resolved so will the spasms.
      Unfortunately the hug doesn't create abs of steel.

      D**N, there should be some beauty benefit to it.

      Comment

        #4
        My hug feels like a wet suit that is too tight and therefore I can't take a deep breath. I have always thought of mine as in the parasthesia category- Something that I feel that isn't really there. Mine is rarely a regular symptom. It seems, for me, to come w steroid requiring relapses.

        Gabriella- your plate is full- unfortunately the perfect time for a MS relapse. Take care of yourself.
        ANN
        There comes a time when silence is betrayal.- MLK

        Comment

          #5
          I'm sorry to hear that you are having to deal with this, Gabriela. I haven't specifically dealt with the MS hug, but I have friends who have, so I offer you my sympathies.

          Take care...
          s
          Jendie
          I've been a member of this forum during its different incarnations since I was dx in 9/98

          Comment

            #6
            Thanks

            It is still with me and not seeming to want to go away. I'm also having issues with speaking as the words just don't come out correctly. While telling a friend (who also has MS) that I was having an exacerbation....that came out "I am having an exasperation". That's happening very frequenty when I have been speaking lately but we just laugh it off. I had to change my appointment with the NP until next Wednesday as they rescheduled my husband's c-scan for tomorrow afternoon.

            Not much can be done about the squeeze anyway. I am taking more hydrocodone 5/500 and I'm going to try some low heat tonight with my homedic back vibrating pad and have the A/C turned down to 68. Maybe I do need to be back on the Klonapin but I tapered off as it didn't seem to be working for the sleep issues but maybe it was keeping the boa constrictor at bay. I will discuss all the drug options with the NP next week.

            If I can I will be going to the dinner/drug presentation by Questcor Pharmaceuticals tomorrow night since this is the next step up drug that my neuro wants to trial me on. I'm sure all the stress of my husband's condition is a big part of my relapse but that's life with MS. On top of everything else a virus has invaded my e-mail address book and sent out e-mails with a website to link to all my contacts. I couldn't even get into the e-mail account until tonight and I had to change my password in order to get back in.

            Hope it doesn't do any more mischief with finances....more stress....as if there is not enough already!

            Blessings to All,
            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

              #7
              Gabrielle,

              Maybe a phone call to that NP to see if you could re-start the Klonipin? I don't want you to suffer until next week.

              I did some reading and found that people use pressure (???), aspercreme and similar salves, Motrin, and cold/warm packs for home remedies. Also imagery. For drugs, klonipin, valium, elavil and neurontin have been tried.

              Here's what the NMSS has: Only registered and activated users can see links., Click Here To Register...
              ANN
              There comes a time when silence is betrayal.- MLK

              Comment

                #8
                I hope you find some relief soon, Gabriella. I haven't had the hug in years, thank heavens. It's awfully uncomfortable.
                Love, Sally


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






                Comment

                  #9
                  :) Gabriella I have been keeping you and your husband in my prayers. I hope your hug quits hugging you soon. Jeanie :)

                  Comment

                    #10
                    Acthar Meeting

                    Just got home from the dinner/presentation on Acthar. It is used specifically to treat relapses when steroids do not work. I am going to call the MS Center and see if they got approval from the insurance company for it. It was in the works last year when I had to go into the hospital for steroid infusions and then that lead to IVIG infusions for the myasthenia gravis and MS.

                    We will see just how reliable the office staff is.... as it was going to be the next treatment for me when I needed it!

                    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

                      #11
                      Nope not reliable!

                      Even though the staff started working on it last year to see if insurance would cover the cost... it seems it was put aside when the neuro decided to put me on the IVIG's instead. At the time IVIG's were what I needed....Now that I have had another relapse....I need somthing for that. 5 days of IV steroids did not work for me the last time so it is time to try something different....Acthar Gel. It just costs $23,000 for a vial with enough for 5 injections. This has been around in another form since the 80's as ACTH injections given to children for spasms. It was just reformulated as treatment for MS. The price went up from $230. to $23,000. a vial.

                      For people in whom it works it seems to work well. The NP giving the presentation last night said he has people calling the office who only took 3 days of it but want to take it again at a later date just to get that "feel good" feeling......sort of like crack cocaine..! That is exactly what he said. I don't want to sound like this is derogatory to anyone of another race who might be here but I was only one of six caucasians in a room of 25 African Americans.

                      I have read that MS is not as prevalent in the African American population but that must not be true in Atlanta, Georgia. The meal was paid for by the Questcor Pharmaceutical company and this group must be regulars at the comp dinners as the drug rep announced where their next meal would be tonight. A county bus for the handicapped was waiting outside the restaurant when I left so there was a large group from somewhere who all came together.

                      Of course this cost is passed on to everyone who has to purchase the drug. The NP also gets paid as well as the patient advocate who was promoting the benefits of this drug.

                      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

                        #12
                        Finally!

                        I didn't drive into Atlanta for the NP appointment as I didn't feel up to it but I called and spoke to one of the nurses about getting started on Acthar Gel. It is being shipped UPS overnight and I should get it tomorrow. The price has gone up to $30,000. for a vial that provides 5 injections. My government retiree insurance is going to cover the cost and my co-pay is only $150. It is only for exacerbations and not a cure...I was told. Just think what a cure would cost?

                        It should work miracles at that price.....maybe I'll feel up to cleaning my house!

                        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

                          #13
                          It should work miracles at that price.....maybe I'll feel up to cleaning my house!
                          Gabriella, at that price you should be up to cleaning all our houses!
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                          Comment

                            #14
                            The UPS delivery just left the order and I've been checking it out. The size of the needles made me feel faint and I'm trying to get up the courage to inject into the thigh muscle again as I did when I was on Avonex.

                            Sorry, Agate but I don't think I'll be cleaning unless a miracle happens with this shot and then I will pace myself and not overdo.

                            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
                              ACTH

                              I called Questor and asked for a nurse to come out and help me with the first shot as I now have needle phobia after my experience with Avonex. There actually is a needle which is much longer that is used to withdraw the gel from the bottle into the syringe. The needle used for the injection is 5/8 inch long. The injection went well and I only had a slight headache with the first one on Saturday while the nurse was with me.

                              Today was a different matter. I must have hit a vein as I have a hematoma and bled more than I should. I put ice on it several times and now it is a bruise.

                              No miracle results yet and with 2 shots down.....at $6,000 each....I should have cleaned my entire house by now.

                              Tomorrow, I will call the nurse line to find out when I can expect my "miracle".

                              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

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