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: Kathy, 55-64 Female (Patient) Published: April 01

I knew that in my early 30"s I had multiple sclerosis (MS). It was in the 80s and for nearly 10 years I heard all kinds of garbage from doctors. My first cousin had it and I knew her symptoms. I had tingling in my hands and feet and then nerve throbbing. I took two chemotherapy level treatments of an old steroid and developed diabetes. I tried one of the new drugs and it didn"t work. But since 1997 I have been on Copaxone. In the last year the numbness is more severe and symptoms are increasing but I keep hoping and keep moving. I do not wish MS on anyone else but it has made me a better person. I am grateful that I can still walk and drive.

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Comment from: Melissa, 25-34 Female (Patient) Published: March 13

My symptoms started when I was 23. I had tingling in my right foot and it felt very heavy. I had a hard time walking. I also had some dizziness. Doctors didn't know what it was, so they diagnosed me with possible mild Guillain-Barre syndrome. Then 2 years later, the same thing happened, only worse. I was referred to a neurologist, had an MRI and was diagnosed with relapsing remitting multiple sclerosis (RR-MS).

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Comment from: catwoman, 45-54 Female (Patient) Published: December 05

I was going to a gym and had a personal trainer, he told me I appeared to be dragging my right foot. This scared me, thought I had had a stroke, so I went to my primary physician and he ordered an MRI. He called me and told me I had MS (multiple sclerosis) and he wanted me to see a neurologist. I went to the neurologist, who examined me and did not believe I had MS, so he ordered the spinal tap and lots of blood work. Then he said that yes, I do have MS.

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Comment from: mydogrudy, 55-64 Female (Patient) Published: November 20

I was diagnosed with RR MS (relapsing-remitting multiple sclerosis) back in 2010 and was taking Avonex Injections for a year. Then I had MRI of brain taken by neurologist, who said there were MS lesions. I had various symptoms of Imbalance, HA (hypertonia arterialis), leg numbness, difficulty walking, and LP (lumbar puncture) with no real high abnormal values. I had high basic protein, WBC, but no bands or IGG. My MRI showed no MS. So I got a second opinion and was told no MS. I was so confused. I still have horrible problems walking, dizziness, imbalance, and weakness in both legs, visual, and horrible muscle spasms where my foot lifts off floor. My aunt was diagnosed at age 72. I do have lesions, but told later they were not related. I am confused!

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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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Patient Comments

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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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