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    • #19672
      Jodi Enders
      Keymaster

      Myasthenia gravis characteristically results in the weakening of the muscles, including those in the neck.

       

      The weakening of the neck muscles for me leads to the most pain out of all the MG symptoms. I have never realized how heavy our head is and the amount of strength required in our necks. Not only is it embarrassing to have to use neck support and an ice pack wrapped around my neck for comfort, but sometimes I don’t have access to one. The neck pain sometimes is so intense it makes me feel nauseous. 

       

      Typically, my neck goes weak because my head is tilted down for a specific activity. Personally, this includes looking for shark teeth in the sand, doing remote work from my laptop, making jewelry, or hand washing dishes and clothes. The frustrating part is that the neck weakness often hinders me from completing what I was in the middle of doing. 

       

      What weakens your neck the fastest? How does it make you feel? How do you find comfort when this happens?

    • #19686
      Willem
      Participant

      Hi Jodi. When I have weakness in my neck I revert to laying back on our lounge sofa until I feel that some strength returns.I am fortunate that I am retired and no need to get tasks done in a hurry. Going back in time I recall that my dad referred to me having a floppy head when I was about 15 to months old. Nothing was thought of it in mid nineteen forties then. At the moment I tend to have a bit of torticollis that I live with, causing me to have a slight tilted head now.

    • #19689
      Keith R Anderson
      Participant

      I also have the neck weakness and pain. I believe the pain is due to arthritis. I use heat pack in the morning and cold pack in the afternoon. Then I have a hand held massager which all seems to help. The mestinon works for a few hours. Trying to get back into golf again and at least I don’t have any problem keeping my head down

    • #19703
      Jim Lisy
      Participant

      My wife was recently diagnosed with MG, about 2 months ago. While her initial symptoms were primarily ocular, in the past two – three weeks, they have gotten worse. She is experiencing weakness in her shoulders (can’t lift her arm above her head), neck weakness (dropped head syndrome), and difficulty swallowing (which impacts her taking her medication, Mestinon 180 mg time-release). I have a few questions that I hope the forum members may be able to answer or advise. First, is this rapid increase in serious symptoms unusual or typical (my wife is 70 years old)? Second, are there any suggestions (in addition to William’s) on how to regain strength in the neck during the day? Third, has anyone used a neck brace for the dropping head syndrome, and if so, is there a type or brand that you would recommend. These are very scary times for us, and we are so glad that there is a forum and organization that provides so many needed answers to our concerns.

    • #19704
      Sophie
      Participant

      I have the opposite of drooping head syndrome, where I lift my chin up 24/7 even in my sleep and am not always aware that I am doing it.  Not only do people stare and make fun, I also experience constant neck pain. Only diagnosed with ocular MG but few years into disease, I started having neck and bulbar weakness (tired from chewing food too much). Neurologists never offered a solution and did not diagnose me with GMG (one said my chin lift is due to eyes weakness and am compensating). I will try ice pack and massager..

       

       

       

       

       

       

    • #19705
      Sophie
      Participant

      Jim, sorry to hear about your wife 🙁  I do believe her manifestation of symptoms is common. Symptoms spiraled for me the first 6 months until accurately diagnosed and stabilized on prednisone. Did doctors prescribe any immunosuppressant drugs or corticosteroids? Mestinon/pyridostigmine does not delay/prevent the progression of myasthenia gravis, it is a transient band-aid that lasts only few minutes/hours. In regards to regaining strength during the day, the only thing that helps for me is to take a good nap after being awake for few hours, and doing some neck and upper-back strengthening exercise only when I am feeling strong. I would not recommend doing any exercises when she is feeling weak as it can only worsen her symptoms.

      • #19708
        Jim Lisy
        Participant

        Thank you, Sophie

    • #19712
      William E Freeman
      Participant

      Greetings, and I have had MG for around 5 years, and never really thought the somewhat minor, but constant and annoying, neck pain as a result of MG , but rather anthesis. I have had a tilted head for a long time, even prior to my MG diagnoses, but never really thought much about it.  My physicians have never asked me about my neck pain or about my tilted head, so hearing others having that issue is extremely interesting. What I am discovering is that although my physicians all are associated with one of the major medical institutions in the country for my condition, they still seem to not be able to connect all the dotes. Thank you all for enlightening me on this condition.

    • #19718
      Robert Powers
      Participant

      Having been very active with above average strength, as a once varsity wrestler, competitive weight lifter and tactical mountain climbing instructor, and more,  having MG muscle weakness in legs, arms, back, etc has been frustrating, to say the least!   I was first told that my weakness came with age….but I argued that something else was at play…turned out to be MG…

      However, I will be starting a new drug to upgrade Soliris…with the promise of improved strength.  Can only hope!

    • #19735
      Prosper Abusah
      Participant

      Hi Jim ,
      Sorry about your wife’s deteriorating MG symptoms .I also experienced rapid increase in severe symptoms . I went from slurred speech and double vision to difficulty in swallowing in a matter of days to difficulty in breathing in a few weeks . I was admitted into the ICU . It was there that I had my first head dropped syndrome . My head fell onto my chest and I could not breathe . The nurses had to lift up my head before I could breathe . Such rapid deterioration is a sign that the treatment is not adequate or effective . I had plasmapheresis and prednisolone and other immunosuppressant medications . Gradually my neck muscles became stronger and I tried neck bracelets but did not find them particularly helpful . Effective treatment of the MG was the solution .
      Now my neck muscles are very strong . My Neurologist finds it difficult to push my head forward or backwards .

      • #19737
        Jim Lisy
        Participant

        Thank you. She was hospitalized and is now getting IVIG therapy that started yesterday.

    • #19740
      Suzi T
      Participant

      Hi Jodie, I find that by evening time my neck weakness really starts to bother me (although TBH it is always there 24/7) so I wear a neck brace to help keep my head up. I am in constant pain with my neck and shoulder – I was put on Buprenorphine patches to help combat this and I can tailor the strength to how painful my neck has become. I have trigger point injections every 4 months to also help with the pain but it can be a bit hit and miss. Usually after these injections, I can reduce the dosage of the patches down to 10mg. Right now, I am due my injections again and my pain is currently horrendous. I am on 20mg patches and also have to take oral morphine (usually during the night) to combat the pain. It prevents me from sleeping so I tend to be awake for a few days until I am so exhausted that I finally sleep.

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