Patient Comments: Multiple Sclerosis (MS) - 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: Kristy, 35-44 Female (Patient) Published: June 14

I've just turned 40. I had my first attack of multiple sclerosis (MS) when I was 33, I wasn't diagnosed until 3 years later when I became totally numb from the neck down. It was terrifying. I then suffered another relapse 18 months later. My neurologist got in contact to tell me about a new RRMS (relapsing-remitting MS) drug which was only in its trial stage, Campath. I started the chemo-type treatment in September 2014 and repeated it again in September 2015. This has helped stop my MS where it is but sadly there are a few horrid cells which attacked my brain in another relapse February just gone. After the MRI confirmed another attack, I am now to face a third round of treatment to kill off the remaining cells in September this year. If there is anyone out there who has had the same treatment, I'd love to hear. It is only carried out in the UK.

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Comment from: SlowlyButSurely, 19-24 Female (Patient) Published: May 20

I was 18 when I was diagnosed with multiple sclerosis (MS). I am 21 now. I had lost total feeling to my right leg. I had no coordination so I couldn't use crutches. I was a walking zombie, and I felt embarrassed. I've fallen down and ruined the front of my shoes. Before all of this I was super active. Played as many sports as I could, and could run for days. You would think I would be the healthiest person, But no. Scariest moment of my life is being diagnosed with MS. Whenever I do any running outside, my legs start to burn were I would just itch and itch and itch, and nearly ripping my skin off. I've been on 3 different types of medications so far, but none seems to help me. Either I can't tolerate it or one didn't give any results. I always question myself if I ever can get back to playing soccer and doing things I used to do. I have 0 heat tolerance. I always ask how I got this and why me.

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Comment from: Le' Newb, 25-34 Male (Patient) Published: February 23

I turned 29 last May, 12 days later I found out I had multiple sclerosis (MS). I had a doctor's appointment set 2 days after my birthday because my eyes were blurry and I had some blind spots. My doctor did a bunch of basic tests like standing on one leg, pupil reaction time, and using that little hammer to test my reflexes. After about 30 minutes of these tests and some discussion about my symptoms she told me that because she was so concerned she wanted me to get an MRI, and not in a few weeks but today. She called one of her friends who worked at a close by hospital and that day I was admitted. A few hours after my admission, I had my first MRI and the results shortly after. The results that came back really surprised the doctors who were taking care of me. I had 8 lesions in the brain and 3 on my spinal cord, one of them measuring 15 mm. I've already experienced two relapses, one making me lose feeling in my legs up to my upper thigh, and the other making my hands lose the sensation of touch. I haven't even had this stupid disease for a year and now they tell me I have RRMS! I've never had a remission and all my symptoms are still here, not getting any better. I have a hard time walking and I can't walk for very long anymore, before I used to go hiking and biking, now I can't. Before my diagnosis I looked forward to a bright future, now I'm afraid of what it may hold, I know I shouldn't be but I am.

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Comment from: Michael, 45-54 Male (Patient) Published: January 07

I suffered optic neuritis 12 months ago in my right eye. Central vision was lost for 5 weeks but has now returned but there is permanent blurriness and color loss. I have numbness in my left hand and toes and I sweat profusely. My MRI showed lesions on my spinal cord and the doctor has ordered a lumbar puncture which is getting performed tomorrow. After the results are received I'll probably start my medication for multiple sclerosis. Remaining positive and reasonably active have helped me during this journey.

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Comment from: Sunny, 55-64 Female (Patient) Published: May 30

I was diagnosed with multiple sclerosis (MS) in 1994 at the age of 39; however, I had the first symptoms one year prior. My vision was blurred for three months. I had closed my fingers in my front door without realizing it. I knew then something was wrong. I called my primary doctor who examined me and then sent me to the hospital. An MRI was performed and I was diagnosed with MS. I have been on Avonex, Betaseron, Copaxone and now Rebif.

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Multiple Sclerosis (MS) - Treatment Question: What treatment have you had for multiple sclerosis?
Multiple Sclerosis (MS) - Prognosis Question: What's the prognosis with your multiple sclerosis?
Multiple Sclerosis (MS) - Diagnosis Question: How was your multiple sclerosis diagnosed?
Multiple Sclerosis (MS) - Causes Question: Were you, a friend, or relative diagnosed with MS? What do you think the cause might be?
Multiple Sclerosis (MS) - Type Question: What type of multiple sclerosis do you have? How do you cope with the symptoms and your condition?

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