MG related or not?
I am very recently diagnosed (<1 month) at the age of 27, but I’ve been having investigations for very mild but slowly progressive symptoms since I was about 14 years old, although I’d first noticed symptoms at around 10 or 11 (no one believed me that my legs and arms were extremely fatigued in hot weather, they just thought I was a lazy pre-teen!) but there are a few things causing me a lot of trouble lately and I wondered if they are experienced by anyone else, or are they unrelated?
I wake up in the morning and everything is generally normal except my grip strength is almost non-existent. I can just about make a fist with my hands, but cannot squeeze. It improves over the first hour of waking until I’ve got my full grip strength back, but it makes getting ready for the day a challenge.
The other one I am specifically wondering is tendon and muscle stiffness. I had always been extremely flexible since a young age, I was a competitive gymnast as a child and I went back to the sport in my teens, only recently having to leave altogether due to the breathlessness and weakness I was experiencing, but I’ve found that over the past year I’ve had a rapid decline in my flexibility. I’ve never lost flexibility in the past when I’ve had long stints out of gymnastics, and I’ve been trying to work on it with regular stretching, but it’s getting progressively worse to the point my Achilles is tight when I crouch down and I caused myself severe pain in a tendon in my inner thigh today just trying to show my children a cartwheel, I have never not been able to cartwheel before now. Has anyone with MG found that it has caused similar issues or that unrelated?
There’s not much info online that isn’t the most commonly presenting symptoms, so anyone who can share their experiences with me would be really helpful and I appreciate it! I’m in the UK, but would be grateful for responses from people anywhere and everywhere of all ages.
(I don’t yet know the specific subtype of MG that I have, and I know there are a few, but it’s definitely not ocular/bulbar onset because the visual symptoms were the last to appear and the thing that finally led to my diagnosis) thanks so much in advance 😊
Hello! We're so excited to have you join our community. Welcome from all of us! I send much compassion your way as you begin navigating this new aspect of your life.
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You highlight crucial concerns. Doctors all too commonly tend to gaslight and dismiss MG symptoms when presenting in any individual under 25 as being due to an active lifestyle.
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We understand how problematic it can be to cope with symptoms first thing when you wake up. And this isn't good for mentality first thing, either. Have you been seen by an MG specialist yet or scheduled an appointment? Pyridostigmine works as a bandaid medicine and works fast and typically provides a couple of hours of improvement. However, there is a slow-release version, which many are prescribed for nighttime use to help ease those morning symptoms. https://myasthenia-gravis.com/treatment
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Knowing you're not alone in dealing with stiffness and pain is important. Many people with MG experience similar symptoms. It can be frustrating when doctors don't recognize these symptoms as being related to MG, emphasizing how essential it is to educate yourself about MG and learn from the experiences of other patients. Doctors may have limited knowledge due to the relatively small number of MG patients they see, and they often rely on scientific research and studies to guide their understanding. Remember, you are your best advocate in managing your condition. Here are some resources that may be helpful: https://myasthenia-gravis.com/living/muscle-weakness-feeling and https://myasthenia-gravis.com/living/educating-yourself.
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There are numerous mentions of thigh pain throughout the comments in the following popular discussion: https://myasthenia-gravis.com/forums/leg-and-foot-cramping-and-pain. Here are some mentions of the stiffness sensation specifically: https://myasthenia-gravis.com/forums/mg-symptoms, https://myasthenia-gravis.com/living/fatigue-coping, https://myasthenia-gravis.com/stories/mg-diagnosis-changed-my-life, https://myasthenia-gravis.com/forums/new-to-myasthenia.
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Regarding your MG antibody type, most people experience doctors not informing them of this. Bloodwork of those with MG comes back positive for either one of the MG antibodies:
Acetylcholine receptor (AChR)
Muscle-specific tyrosine kinase (MuSK)
Low-density lipoprotein receptor-related protein 4 (LRP4).
You can also be seronegative, meaning you have MG without one of the common three antibodies (possibly an undiscovered antibody in research): https://myasthenia-gravis.com/blood-tests. I encourage you to contact your doctor to find out which you have, as this can help you better understand your unique experience with MG and your future treatment direction.
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I also suggest checking out MyAware, https://www.myaware.org/, a UK-based MG organization.
-Jodi, Team Member
