I am not sure how to manage this
I have been diagnosed with Lambert Eaton Myasthenic Syndrome and Seronegative Myasthenia Gravis. I have issues with Voluntary muscles eye dropping fast eye sagging facial muscles throat muscle issues. I also have several issues that involve non voluntary muscles. My Diaphram muscle is weak and my digestive system is paralyzed. My symptoms are almost all common with Lambert Eaton Myasthenic Syndrome especially my newly discovered multiple nodules in both lungs and a shadow in my left lung. We are currently going for biopsies of a couple of the nodules to rule out cancer. I have a very busy schedule of tests and appointments becuase this is effecting my lungs my heart my digestive system and I am so weak I struggle to function and i am falling constantly. I aspirate food contantly and struggle coughing it up. If my wife wasn't taking care of me I would be in a nursing home. I just wish they could start some sort of treatment.
Hi Edwin. I'm so sorry for you. Because LEMS is so often associated with cancer, especially lung cancer, I suspect a treatment plan is being withheld pending the results of all the tests. Ask your doctor if you can begin taking Pyridostigmine. It will make more acetylcholine available in your neurological junctions and hopefully improve your strength enough to prevent falling. I know it is strange to hear, but even with all your other conditions, falling is your most immediate risk. Good luck my friend.
