Hello. My name is Dee and I am a new member here after lurking for a few weeks. Dr Rosenberg at Johns Hopkins gave me this website.
My long story has been posted under stories. In a nutshell, I was diagnosed with multiple sclerosis at Hopkins ten years ago. That diagnosis was confirmed at the Cleveland clinic MS Center and the Mayo Clinic. These three hospitals are considered among the best in the US. My diagnosis was centered on my extreme dysequilibrium and paraventricular white matter lesions on my MRIs. These lesions stayed the same size and number for many years and then last year they increased in size and number. At that time my diagnosis was changed to MAV and the lesions were attributed to that.
My question is whether anyone else has these lesions? I’ve read many of your stories over the weekend and I haven’t read that anyone else has these irregular MRIs. My symptoms continue to be dysequilibrium, fatigue and vision issues. My triggers are similar to what many of you havd expressed. Began Verapamil (80 mg), Zoloft (25 mg) and Ativan (1 mg) as needed. Sorry for the length of this email but comments and suggestions would be welcome!! Also I apologize for my many typos…vision an issue today!!