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    • #19672
      Jodi Enders

        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

          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

            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

              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

                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

                  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

                      Thank you, Sophie

                  • #19712
                    William E Freeman

                      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

                        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

                          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

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

                          • #19740
                            Suzi T

                              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.

                            • #19741
                              Mark Shear

                                I mostly only had droopy eye, double vision when I first got the disease in 2019. When I had my first relapse (for lack of a better term) it progressed with neck weakness at times.  Long story short after IVIG, prednisone and mestinon were not making it any better, I have had a cycle of Vyvgart which helped a lot with all symptoms but mostly the neck weakness. Now a little over 2 months later, the neck weakness and need to nap has come back but milder so far. I never experienced neck pain other than the heavy head neck weakness. I think it’s time for the next cycle of vyvgart infusions but waiting for my doctor to decide. This is a strange disease as I never know when my neck or eyes will be good or bad.  Mestinon and naps help briefly. I don’t know if I’m too tired or lazy to exercise but trying to get back into exercise bike riding. Use to road ride 30+ miles or mountain climb (real mountains) so I know what I could do if I can get exercising again.

                              • #19743

                                  Hi Robert my name is Monica and I have been on Soliris for almost 3 years been doing very well on it my doctor wants me to start Vyvgart not sure about that but I have been thinking about Ultomiris that seems to me to be more stable as I travel a lot.  Is that the one you are going on if so please let me know how it goes thank you and good luck hope what ever it is it works for you.


                                • #19747
                                  Debbie Layman

                                    Hi, I’m recently diagnosised 03/01/2023.  I have experienced neck pain, weakness.  First noticeable symptoms were speech/, chewing several years ago. Spent 3 days under observation in hospital, thought I had a stroke. Released with no diagnosis. Issues occurred off and on had muscles weakness & off and on blury vision (aging). Dec 2021, extreme head drop, diagnosis pulled muscle. Then I contracted COVID. Late Jan 2022 severe ocular symptoms. No longer able to work. Eye surgeon took one look at me and knew what I had, confirmed with blood tests. Finally!  Started Mestinon and prednisone. Some improvement. Weaning off prednisone, started IVIG Privigen. Started cellcept last week.  May supplement with IVIG going forward if needed.  I too was having neck pain again. As I was up and around more.  Started physical therapy with a wonderful therapist that is very familiar with MG.  I am learning energy conservation and we are working on strengthening my back muscles, along with balance and general overall conditioning.  That has helped immensely.  My ghoughts go out to all with MG. It is so inconsistent.. you rest one day so you feel better the next.

                                    Thank you all for your posts.. this is my first one and much too long.

                                  • #19751
                                    Prosper Abusah

                                      Thanks for letting us know . Good luck with the treatment .

                                    • #20144

                                        I also never link neck pain and hard to hold up to MG. Haven’t figured out how to deal with it yet. My daughter got me a neck cushion, but it doesn’t work. To large. 

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