Newly diagnosed
I recently went toa neurologist because of amyriad off what to me were unrelated symptoms:. Balance issues, hands tremor, double vision, droopy eyelids, coughing when lying down and sometimes when eating, headaches, and neck pain. He did a basic neuro check, ordered some bloods tests and a CT of head and neck. That's the only time I've seen him. A while later his nurse contacts me to say the doctor says I have occular Myasthenia Gravis and put me on Mestinon. Later when he was talking to my pulmonologist (I was trying to get switched from CPAP to bipap but that's another story), he told him my AChR blocking test was equivocal:. Normal was below 0.21 and I was at 0.31. Has anyone ever heard of equivocal results? Do I have Occular MG, gMG, per am I a hypochondriac?
Hello and welcome to our community! We’re truly glad to have you with us. We understand that navigating through the complexities of Myasthenia Gravis (MG) can be challenging. Currently, research hasn’t established a clear connection between the levels of MG antibodies (AChR) in the blood and the severity of the condition. It’s important to know that even a small presence of MG antibodies should be enough for a positive diagnosis, as these antibodies are not found in individuals without MG. Regarding the type of MG you might have, this primarily relates to how many muscles are affected. If you’re experiencing weakness beyond just your eyes, this indicates generalized MG. It seems you may be experiencing this with the neck pain you've mentioned. Please remember that doctors may use different terminology at times, so don’t hesitate to seek clarification if needed. We’re here to support you on this journey.
-Jodi, Team Memberthank you. Sometimes I think it's more generalized but I can also c come up with other e explanations. I am unable to get up off the floor without help out get out of a chair if itt doesn't have arms. But then I'm just getting old (I'm 69). I have to be careful not to fall because a leg will give it on me. Butt I don't feel weak just clumsy and it's my knee giving out so probably arthritis. I cough when I eat and lie down but that's because my lungs are screwed up ( I have a history of aspiration pneumonias so there's probably scaring). So I go back and forth in explaining away possible symptoms. It sounds like you’re going through a lot, and it’s completely understandable to feel the way you do. Finding the right support can make a big difference, whether adaptations at home, physical therapy, or talking to a healthcare provider about your symptoms. Please remember that you’re not alone in this – many people face similar challenges. If you ever feel overwhelmed, reaching out to someone for support can help. Take care of yourself!
Jodi, Team Member
