Remembering My First MS Symptom

Ed Tobias avatar

by Ed Tobias |

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What was your first MS symptom?

Mine — the one that made me realize something was really wrong — was my inability to squeeze the toothpaste tube with my left hand one morning. Of course, there were earlier hints of trouble. I was unusually tired while attending a business conference. On the flight home from that conference, I felt spacey — there’s no other way to describe it. Another time, I accidentally drove through a red light because my peripheral vision suddenly narrowed and I failed to see the traffic signal to my right.

My wife made fun of me for complaining my legs were getting tired after only a couple of runs down an easy ski slope. One day she accidentally tapped my left foot and it began to shake. It was clonus, another MS symptom. I didn’t know that, but my wife, a physical therapist, did.

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I saw a doctor, and when she tapped my left knee with a rubber reflex hammer, my leg shot out so fast and far that I kicked her in the stomach. But it was my weak left hand that bothered me the most. I knew, after trying to ignore things, that I wouldn’t be able to squeeze this toothpaste back into the tube. That was in 1979. I was diagnosed in August 1980.

A lot of symptoms on my chart

Since my diagnosis, I’ve lived with a medical chart full of symptoms, as most of us do. The most debilitating has been my left foot drop and my general leg weakness. It’s hard to walk more than about 100 steps, even using two canes and a Bioness L300 Go functional electronic stimulator. Other symptoms include fatigue, heat sensitivity, spasticity, restless legs in bed, and bowel and bladder problems. Oh, of course, there’s also “cog fog.” I almost forgot.

My bladder and bowels have improved over the past few years, as has my fatigue. My vision problem only occurred that one time, and my weak left hand returned to normal after my first infusion of the steroid Solu-Medrol (methylprednisolone sodium succinate).

Your symptoms may vary

I’m revisiting these symptoms because of a project recently started by my friend and former MS News Today columnist Laura Kolaczkowski. Laura has begun producing the podcast “MS Diagnosis Journey.” It’s a series of short chats with people with MS about how they discovered their illness, the diagnostic tests they took, their experience with neurologists, and the like. It’s all information that’s likely to be especially interesting and useful to MS “newbies.” The podcast can be found on all the major podcast platforms, or you can search “MS Diagnosis Journey podcast” to listen via a website. I expect my interview to be available on May 12.

I also just discovered an A to Z listing of MS symptoms in the latest issue of Momentum, the National MS Society’s magazine and blog. The story includes 23 symptoms, such as fatigue, the “MS hug,” and kissing issues. (The letters X, Y, and Z are rolled into a “ways to live well” lump.) It’s an interesting read.

What were your first MS symptoms and when did you notice them? Please share in the comments below. You’re also invited to visit my personal blog at www.themswire.com.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Yvonne Ashman avatar

Yvonne Ashman

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.

Reply
Ed Tobias avatar

Ed Tobias

Hi Yvonne,

Thanks for sharing all of that. I've heard so many stories over the years of docs who think all that's needed is more exercise and less food that I could write a book. (Gee, actually I have written a book. It's called "The Multiple Sclerosis Toolbox." Shameless plug.) It sounds as if you've managed to turn things around a bit since your diagnosis by following my favorite advice: Life isn't about hiding from the storm, it's about learning to dance in the rain. Bravo to you!

Ed

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Karen Bates avatar

Karen Bates

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 ☹️.

Reply
Ed Tobias avatar

Ed Tobias

Hi Karen,

I'm really sorry that you had to retire so young. It makes me even more appreciative of being able to work, full-time, until I was 64. Have you been able to do something else to keep you involved in things since you retired?

Ed

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Ruth Hoham avatar

Ruth Hoham

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….

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Ed Tobias avatar

Ed Tobias

Hi Ruth,

I have no doubt that stress also played a role for me, working in the broadcast news media for a boss who I didn't get along with, when I was diagnosed. It'll be interesting to read the experiences of others. Thanks for sharing yours.

Ed

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Deidre Squairs avatar

Deidre Squairs

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.

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Ed Tobias avatar

Ed Tobias

Hi Deidre,

Thanks for sharing all of that. I'm sure that many of us can associate with your story. (Well, maybe not the breast feeding for me.) Stress seems to be the common denominator here. It certainly played roll for me, when I was DXed at 32. I'm glad that things are going well for you and I think your overall attitude has something to do with that. Also, THANK YOU for whatever roll you played in working with COVID-19 patients. We're still not out of the woods but I think we know the path we need to follow to get us there.

Ed

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Nancy Starks avatar

Nancy Starks

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.

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itasara avatar

itasara

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.

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Cathy Chester avatar

Cathy Chester

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!

Reply
Ed Tobias avatar

Ed Tobias

Hi Cathy,

Thanks for sharing that. Growing up in Manhattan I know the Port Authority terminal well and have heard many tales about it, but yours is unique! But you've only told us half...how were you able to hobble home?

Ed

Reply
Cyndi avatar

Cyndi

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.

Reply
Ed Tobias avatar

Ed Tobias

Hi Cyndi,

Thanks for sharing that. It looks like we've traveled similar paths. DXed in 1980 at age 32, stressful job, minimal visible symptoms for about 20 years, now two canes and a scooter. And yes, we are lucky.

Ed

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