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Is anyone out there with Late Onset Ms?

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.

  1. Hi . I am glad you ruled out psychological causes, but I am sad you even felt the need to do that. Your symptoms are real. What's happening to you is real. There are plenty of 70-year-olds who do not have your symptoms, so blaming it on old age and making you doubt your on mental health is not acceptable. Many people with MS are diagnosed later in life. It is actually quite common, in part, because they probably had MS for a long time and are only really experiencing progression later in life. If you do have MS, you might have had it for years with old mild symptoms. Did your primary care doctor refer you to a neurologist? If not, you might want to get a second opinion or find a new doctor altogether. A good doctor, one who is truly a partner in your care, would have sent you to a neurologist if there was evidence in your MRI of MS even if your doctor believes MS is not the cause. You have every right to know what is going on in your brain. When you do get a neurologist referral, you might want to find someone who specializes in MS. The National MS Society has a tool for finding one in your area. Here is a link: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. If your symptoms get much worse, go to the ER. A round of IV steroids might help if it is MS and you might get that neurologist referral from the ER doctor. I hope this helps and that you get the care you need and the answers you deserve. Please know we are here for you along the way and keep us posted if you feel comfortable doing so. Wishing you the best. - Lori (Team Member)

    1. I am sure glad I searched "late onset" on the site today because I was going to post about it if no one else had. I am 61 years old, had an abnormal MRI last month that suggests MS as one of a few possible diagnosis, and I see a neuro in early August. My daughter was diagnosed with MS 3 years ago at age 33. And it is NOT impossible for someone our age to be diagnosed with MS....my daughter attends a support group and tells me there are many newly diagnosed people there that are my age and older. My GUESS is that we have "had" MS for years or decades and it just wasn't diagnosed earlier. I look back at the wacky stuff that happened to me over the years and can now recognize that they may have been symptoms of MS that were never recognized as such. And about researching on the internet...when you feel like you are being ignored, swept under the carpet, dismissed, not believed, etc. by your doctors and even by family, friends and spouses....you BET we are going to do our own research because we are left with no choice. 😠 Anyway...I could go on and on but just want to tell you that you are not alone and I completely understand what you are going through.

      1. I have not had late onset ms. I was dx at the age of 49 so it was later than most. I cannot believe the neurologist you saw was such an ignorant jerk. He/she shouldn't even be licensed. I hope you find a better doctor. Some neurologists specialize in ms.
        I had some symptoms present themselves before I was officially diagnosed (optic neuritis) and I had a couple of days of intravenous steroids which helped alleviate the symptoms. I wonder if you have had that. Good luck to you!

        1. I was diagnosed at age 60! and am now 73 with slow progression of mybalance and walking difficulties. I started having trouble controlling my right foot in 2006 and since I have a long history of knee injury and 2 open knee surgeries, I ascribed it to arthritis in that very damaged joint. So I had total knee replacement done in 2007 and had an infection and another opening of the knee and 6 weeks of self administered IV antibiotics. My foot control got worse and after seeing myGP and a physiatrist (had epidurals in my spine for supposed sciatica) I was worsening still.
          Got finally diagnosed by a neurologist based on the MRI. Old people must be on the alert for ageism since my original neurologist was not hitting me with the more aggressive drugs and I continued to decline in walking ability. I think if I had been younger, I would have received more aggressive drugs, but you get 'written off" as someone who does not need the most effective treatments since you are 'old.' And you will probably be not doing much anyway! Huh!?

          1. Hi . Thank you for that reminder. Far too many people with MS are told they are "too old" for MS medications and they accept that as truth because it's coming from a doctor. It is so important to self-advocate, especially as we age. Thanks for sharing your story. I am glad your progression is slow and I hope it never picks up. Wishing you the best - Lori (Team Member)

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