Just diagnosed at 70 years old. Is anyone like me out there?
I was just diagnosed yesterday. I really didn’t think I had it so it was a shock. I read most people get it in their thirties and forties. My symptoms started in January after the new year with a cold that went into a heavy exhaustion I’ve never felt before. I then supposedly developed post viral gastroparesis..with vomiting, nausea, and hiccups. I wound up in the hospital with that because I couldn’t keep anything down..including water. In the hospital I developed a burning pain behind my ear and down my neck and chest..on the right side only. I’ve had mris, cts, etc..Two neurosurgeons couldn’t figure out what it was. I went in for and EMG test…The EMG neurologist asked me what my symptoms were..When I told him all the symptoms he didn’t react..but when I said I had a bad case of hiccups..that sent the red flag up. I guess the damage that I got was the pain in front and side of my neck with nerve pain causing a painful burning sensation down my clavicle across my chest to my shoulder. I see a neurologist on Monday to talk about my options for meds…but since I’m older I don’t know if my body will be able to stand those powerful drugs. I would love to hear from anyone somewhat near my age..and anyone else that can shed some light on what I can expect. I’m very frightened..as is my family.
Hi JoanneS,
I’m glad to hear from you as I was diagnosed with NMOSD, (AQP4-antibody positive) at 60 years old. I’m now 69. I know the feeling as I was very scared when I received my diagnosis. The first thing you need to always know is that you are not alone! Though this may be a rare disease, there are a lot of us that you can lean on here!
I’ve been taking preventative medication for the past 8 1/2 years and am doing well, now. I was on 1 medication for the first 2 years that did not agree with me and had to change, but since that change I have felt much better & no relapses. The damage that was done with my initial 2 attacks still remain, though I have been able to progress with a lot of physical therapy & exercises. (And I was never one to do exercises before!). I am lucky to have a wonderful neurologist who does a lot of research into what is best for her patients. She recently told me that she has a 94 year old with NMOSD who is on medication to prevent attacks and she is doing very well. I hope this helps a little to ease your stress. Never forget - we are in this together!!
