Newly diagnosed at age 82
Since 1997 I've had symptoms which I think have been myasthenia gravis all along but was misdiagnosed with a psychiatric disorder, bipolar II rapid cycling. Symptoms were physiological only, with deep fatigue, muscle weakness, problems with motor coordination, and tingling sensations. Between episodes I was fine. But slowly symptoms increased and became persistant - eye droop, facial numbness, problems swallowing, increasing muscle weakness, etc. Finally my ophthalmologist diagnosed me with MG. Blood tests by a neurologist were all negative, but he had given me a presumptive diagnosis from the clinical symptoms. At 82 I feel totally at sea. Is there anyone my age who has been diagnosed for the first time? What's the way forward? I'm already on Mestinon, but I've lost so much strength and am dependent on caregivers. I don't know what the future might look like for someone like me.
Your experience is not unique. "Late Onset" is a subcategory with very specific signs and treatments. Like my husband, many people who begin the path to diagnosis in their 60s or 70s and need to be very persistent. Somehow doctors (even neurologists) often lump the first symptoms with the inevitable signs of getting older. They may see pneumonia and not look for aspiration, or write off vision symptoms as geriatric. Hannah, be patient and optimistic. Even when diagnosis begins in the senior years there is a good path to remission if the medical team is well-versed in the options. We welcome you to the community and appreciate your participation. Juliana (myasthenia-gravis.com team)
Thank you for your words of encouragement Juliana. I feel much comforted just by knowing there's support for this illness out there. Not only support but lots of real life experience and medical know how. Particularly thank you for mentioning the sub-category of Late Onset and your husband's experience. Indeed that's been my experience. And once the wrong diagnosis has been made every physician sees you through the lens of that diagnosis and squeezes new symptoms in to fit! This is the first time I've turned to the web to find community, and I'm so glad I did!
Hannah Russell
I am sorry you are going through this Hannah!! Between misdiagnoses with loss of strength and now dependent on caregivers, it can all be very overwhelming!! While I am not your age, I will be 60 in a few months. And have been dealing with some of the symptoms like you described from the age of 10 & just got diagnosed in Oct. 2020 at age 58. But I was misdiagnosed first with MS, then Parkinsons disease, then MS again. In 1988 was my first breathing crisis, nothing was done as I was told it was an MS hug and it would go away... My Blood test are all negative also!! Has you Neurologist started you on anything besides Mestinon? Mestinon just helps with symptoms not the actual disease. I have been on Cellcept & Prednisone for 1 year now along with mestinon. And just now starting to see improvement. I too have lost much strength and need help for many daily things. Hugs to you & Best Wishes!! Sally team member
Dear Sally, Thank you so much for responding! I'm just on Mestinon at present, but still more testing to come with the neuromuscular specialist at the end of this month. I have a number of other conditions - cardiovascular disease for one - which may make complications in treatment. I suspect this would be so with anyone my age. But just knowing I can reach out and that there will be a kind and helpful response is so encouraging. Thank you! And I wish you well with your ongoing treatment now that the MG is correctly diagnosed. Hannah Russell
