I'm one of those undiagnosed who has almost every symptom in the book--at first appearing gradually with numbness in left leg and face (though I have had other symptoms such as double vision and ms hug for a few years) and then suddenly intensifying in April and simply not letting up. Before that "intensification" as I call it, I had an MRI of the brain, the results of which said ms could not be "ruled out", but which my nurse practitioner said could also simply be considered old age. I will be 70 in September. Until this year, I have lived 70 years of supremely good health (except for a childhood year of Rheumatic Fever from which I was completely cured), never had an operation, never stayed in a hospital, living all over the world--17 years in Africa, 5 years in India, 12 in China, etc, etc. and take no medications. I don't even easily allow myself pain medications. I am not one to get nervous or hysterical about my health and imagine this or that. What is happening to me is real. I didn't even mention the numbness in leg and face for a few months--just making sure it wasn't my imagination before I told a doctor. Now both legs are numb--actually now feeling it up to my waist, my toes and the bottoms of my feet often feel like dead things when I walk--but strange that if you touch these parts, I can still feel that. So, I have to say I don't even know what numb means or if one can call this numb. It has my head in a vise--my face bones feel heavy, like iron, my ears feel like I'm in an echo chamber sometimes, my eyes, in the past three months have changed so much I had to get prism glasses or stop driving. My midriff is constantly, not just occasionally tight. Heat brings it all so strongly, I suddenly feel like Alice in Wonderland and sometimes almost in a state of collapse. I once ate a very large bowl of very hot soup and that had the same effect. I get terrible pains from the back of my neck to my back shoulder (I've had this occasionally through the years), and pain in my mouth. I am less steady on my feet and I think it's because of my eyes that disorient me.
Cognitively, my short term memory is suffering at an alarming rate. I speak three languages fluently and two others somewhat--and now I'm losing English words! The list is long of all these sudden things that have taken over my whole physical being--in three months I feel like I've aged ten years. And sometimes a fatigue rolls over me and I have no choice but to lie down, when a few months ago I managed a race dialogues organization, worked in hospice and food banks. I still do all that, but it is all becoming so suddenly very hard. Am I afraid? Believe it or not, I'm not. In fact, I appreciate how it has increased my ability to meditate and delve deep to get a hold of myself, slow things down. What I'm afraid of is my first appointment with a neurologist in September. I had one other with a horrible, unbelievably arrogant neurologist who wouldn't let me explain anything and actually laughed at me when I mentioned the word ms. Because I could feel his little pricks on my skin and walk in a straight line, he pronounced me "nervous". I mentioned this also to my nurse practitioner and she also laughed--they say it's 'impossible' for someone my age to get ms. And I can imagine how frustrating it must be for doctors to have internet researching, self-diagnosing patients. But what else am I to do? I have researched deeply into nervous symptoms that mimic ms and I don't think that's me. I don't hyperventilate, not prone to hysteria, never had a panic attack, meditate every morning. And this stuff isn't coming and going, this is progressing, the numbness getting more and more spread and profound. I can still walk, I can still dance--it's just that my legs feel heavier and heavier as the weeks go by and I can see that at some point it's going to affect how I walk and can't imagine what the end result will be with my eyes, ears and face. So, I'd like to see if there is anyone out there who has late onset progressive ms and see how they feel and if this is similar.