Patient Comments: Multiple Sclerosis - Symptoms

The symptoms of multiple sclerosis can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Comment from: Basseteer, 35-44 Female (Patient) Published: October 18

I had optic neuritis in May 1998 – I think it was triggered by Lariam. I recovered 100%, and it recurred in December 1998. A brain scan showed only demyelination of the optic nerve, hectic sinusitis, so "neighborhood syndrome" was suspected due to chronic sinusitis. An operation and several courses of antibiotics later I had a recurrence in July 1999 anyway, followed by loss of sensation down the left side (most prominent in the foot). Then I had tingles when walking. Neurologist no. 1 said this was Devic's disease (I was told this was "African multiple sclerosis" because I was born in Africa) but I went for a second opinion. Neurologist no. 2 said it was likely MS. I had evidence of nystagmus on exam during pregnancy. MS was clinically confirmed in November 2002. Currently I am stubbornly exercising as much as possible, working full-time, etc. I failed Betaferon, Copaxone and Gilenya. I need to discuss more options with my neurologist.

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Published: June 19

I was 7 years old when the right side of my face went numb, and I started slurring my speech. I felt really sick with "the flu" and was so tired, I kept falling asleep in class. In gym class, I was running, and my legs suddenly jerked up, and I fell down. I couldn't move my legs or stand up. I got some feeling back and was able to walk in a robotic manner. I spent two weeks in the hospital complaining about the "fishes eating my legs," and the wax paper over my right eye (this was 1977). Children didn't get MS back then. I spent years with neurologists saying, "We don't know what this is,” and “Come back when you get worse.” I was diagnosed in 2003 when I finally saw an MS specialist. I've been living with MS my entire life.

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Published: June 19

My son's symptoms were over a three-month period. It started in his back. On and off for two months, my son had pains and aches across the middle of his back. We saw my aunt who is a chiropractor and then my son's doctor. Both said he was very tight across his back and suggested physical therapy. It didn't help. That subsided and then his pinky finger went numb for a few days...again, that subsided. A month later, I noticed he was walking funny...that also subsided. The back pain came again, but this time my son called it a “buzzy” feeling...but it subsided. Somewhere in the middle of all this, he experienced balance issues, only once though. We knew something wasn't right. Right before our doctor's appointment we noticed his left side was a little weak. His doctor confirmed that he was definitely having issues with balance and reflexes. He referred us to a neurologist. That same night, we had his first spinal MRI and then a day later the brain MRI. Both tests confirmed MS. Turns out he has many lesions in his spine that were causing the back issues. I hope this helps someone. We haven't met any MS patients that actually started with the back pain.

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Comment from: Serenity, 55-64 Female (Patient) Published: July 03

My MS began with back pain; back pain then progressed to numbness. There were several years filled with odd symptoms such as blindness (abated with steroids). I was diagnosed with MS at age 50. I live in a small town and was diagnosed only after my physician's daughter was diagnosed, and he recalled me, his patient, with the same unusual symptoms as his daughter -- no energy, dizziness, poor balance, numb feet, to name a few. I miss riding my bike, wearing high-heeled shoes, and going dancing with my husband.

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Comment from: just me, 45-54 Female (Patient) Published: August 26

My arms kept falling asleep, and doctors ruled out carpel tunnel, then I went blind in one eye but not further testing done when I got my vision back. Then right leg stopped working and over night the feeling from my face to my toes was heavy, numb and dragging. I tried Copaxone for 5 years, but then was introduced to all natural products and I no longer am taking 7 prescriptions and do not wear the brace on my right leg anymore.

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Comment from: 35-44 Female (Patient) Published: August 26

My symptoms started with blinding headaches that would last for days. Then I started developing numbness and tingling in my lips from time to time which I ignored. One morning I woke up and the my left foot and leg were numb and then when I got in the tub the water was warm on the right side of my body and ice cold on the left; at that point, I knew that something neurological was going on.

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Multiple Sclerosis - Treatments Question: How do you manage your multiple sclerosis?
Multiple Sclerosis - Diagnosis Question: How many doctors did you go to before you received a multiple sclerosis diagnosis?
Multiple Sclerosis - Causes Question: Were you, a friend, or relative diagnosed with MS? What do you think the cause might be?
Multiple Sclerosis - Type Question: What type of multiple sclerosis do you have? How do you cope with the symptoms and your condition?

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