Remembering My First MS Symptom

For years I suffered with overwhelming fatigue which I put down to being lazy, and spells of vertigo that put a stop to my motorcycle riding and made me a pedestrian. Symptoms were so vague, so I kept them to myself for years. I'd always been slapped down by the medical profession as I was obese, and, as far as they were concerned, all I needed to do was exercise more and eat less - et voila! - I'd be miraculously cured of everything from a broken toe to migraine. (Despite spending 4 hours a day speed walking and crunching numbers at the local gym...plus eating less than 800 calories a day. Go figure...)

In 2012 I lost the vision in my left eye...a quick visit to my optometrist, a few eye tests, and I was rushed to the Eye and Ear Hospital in Melbourne. Twelve months of testing later and an MRI showed what the problem had been all along...

I don't beat myself up anymore about 'being lazy'...and, I've lost weight to help with mobility. Strange what the right advice can do for you...It's not all plain sailing with the medical professionals I see, but I now have a focus and an understanding that sometimes I need to adjust my expectations, compromise and develop new ways of achieving my goals.

My first symptom appeared on the 6th Feb 2012 (quite precise I know, but it was my partners birthday on the 10th Feb and it was the following day (the 11th Feb) when I had my second symptom - waking up very very tired).
My original symptom was my hands felt ‘funny’. I couldn’t even wash my hair as my hands didn’t feel ‘right’. I needed help doing this.
Despite this, I still went in to office (I was a very conscientious PA and constantly busy), so after I really couldn’t function properly on the 11th Feb, I never made it back in to the office, which I was sad about as I genuinely loved my job.
I was 34 when it happened, and had to retire at 36 ☹️.

I can’t remember a “first” symptom. I was aware of frequent fatigue, but like Yvonne assumed I was just lacking initiative! Interestingly, it was usually associated with stressful situations, of which there many with my narcissistic mother (RIP) and ex-husband. Wish I had known what was going on at the time. Would have improved my self esteem to know I was not “to blame” for the lack of energy. SIGH….

My first symptom appeared in the fall of 2017, I was a struggling first time mom with a 5 month old trying to balance work, home and myself. I was doing an Alzheimer's walk with my son and husband when it started to feel like I was walking through knee high water. I couldn't even make it one lap around the race area. The leg weakness had been occurring on and off over the past week, but this was the worst. At the time I thought that it was just stress, I had been struggling with breast feeding and decided that it was time to call it quits, I had done my best and that was ok. The leg weakness went away. Turns out I was right, that it was stress, just not stress as I knew it. In December 2020, I had my annual physical with my PCP and I noted having a lot of anxiety, I am a health care worker and COVID was taking over our lives. My PCP didn't seem too concerned because my symptoms weren't alarming. I worked on non medicinal treatments which did help for a time. Labor Day weekend 2021 I started having eye pain, my facility had just started using a full electronic medical record, and I was in front of a computer more then ever. At the same time my family was getting ready for my son, who is special needs, to start Pre-K, which was very stressful. Over the course of the weekend I lost vision in my right eye. After seeing my PCP, an ophthalmologist, going to the ER to be admitted to the hospital, 2.5 hours of MRI and a lumbar puncture I was diagnosed with MS. I was 33 year old.

I feel very lucky that I have not had any long term effects from my symptoms. My legs haven't had any weakness since 2017. My increased anxiety that I experienced has been helped by stress management. I am now rocking a pair of black framed glasses, that I actually love. My husband is very supportive, and continues to remind me that MS is manageable, and manage we will.

My first symptom was double vision at the onset of my MS (in 2004); which I understand is the lessor of the two vision symptoms that can occur when diagnosed with MS. My first bout of this was when I had the flu and my eyes went back to normal after I recovered from the flu.
Two months later it came back with a vengeance and lasted six to eight weeks. It was during this time that I received my MS diagnosis. Eventually my vision came back to normal. The medical term for the double vision I experienced is Internuclear ophthalmoplegia.

I was 57 and the major symptom happened overnight when I woke up with transverse myelitis. I knew right away what it was because I have a daughter who also had TM and was diagnosed with MS when she was almost 20. I had a brain MRI showing brain lesions were inactive so I probably had MS before that time but did not know it. I did have before the TM symptom occasional mild MS hugs but at the time had no idea what they were and my internist did not think much about them either. After my MS diagnosis, I found out what MS hugs were online. Other than that I had no clue anything was wrong. I have not had anyactive lesions since although there was a period of time after diagnosis and after starting Copaxone that I had no MRI's done (-I changed neurologists since.) After age 70, four yrs ago, I stopped with the MS DMT. I am glad that so far I have no major disabilities. My last 3 annual MRIs have been negative and I have another in two days.

Numbness, weakness, and fatigue.

I was walking through the Manhattan bus terminal (Port Authority) on my way home from work when one of my high heels came off my foot. I only noticed it when I realized I was walking "crooked" and glanced back 10 feet to see my lovely high heel being kicked around by busy travelers! My feet were so numb I never felt the shoe slip off.

That's when I realized I better call the doctor!

It was 1984 I was 28. High stress demanding job (Both conditions I thrived on.) Double vision and an astute and awesome ophthalmologist who suspected MS. An appt with a neurologist and MRI followed. MS (which I had never heard of) was confirmed. No DMTs at the time and neuro basically said "good luck". Stuck w/ the ophthalmologist and dumped the neurologist. Kept working at the same job (which I loved) and disguising my MS for the next 28 years (through some at times elaborate schemes a/k/a cover lies). My MS progressed and physical limitations increased. When I felt I could no longer do my job at the level (I) expected of myself, I "retired" and let out the truth. Two wonderful kids (now adults) and a fulfilling career later I realize I was/am a lucky one. My physical decline was slow. Last 5 years sees me able to walk in the house w/ two canes or a walker, but use an electric scooter for anything else. Would love to do stem cell transplant but age 65 and having had MS now for 38 years is not the target patient profile.