Patient Comments: Multiple Sclerosis (MS) - Symptoms

Question:

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

Comment from: Mojog , 55-64 Female (Patient) Published: October 24

Herpes simplex infections are painful and somewhat embarrassing. I've had sores on my mouth since I was a teenager. Now at age 37 I have my first outbreak on and in my nose. Great! I manage it with acyclovir and Neosporin.

Comment from: Scuzie, 45-54 Female (Patient) Published: August 13

My symptoms of anemia were fatigue, shortness of breath, dry and pale skin, hair loss, and muscle aches. A blood test showed my red blood cell count was 2.91 and hemoglobin was 6.3. Additional tests showed my iron saturation to be 3 percent. I take 325 mg ferrous sulfate 3 times a day. The iron made me feel better but I had to stop for tests to check for internal bleed and now I feel bad again. The iron does work.

Comment from: Patricia, 75 or over Female (Patient) Published: April 03

I am 79 years of age and remember I have had multiple sclerosis (MS) since I was 19. My first symptom, as far as I can remember, was chronic abdominal pain. I even had surgery as appendicitis was suspected. As far back as I can remember I've had anxiety and depression, even having 6 sessions of ECT (electric shock treatment), bladder and bowel problems, muscle spasms, pins and needles, memory loss, core strength failing, poor vision and many other signs. No doctor ever put all these together but to be fair we did move around a lot. It wasn't till I had a heart attack at age 60 that I was diagnosed. I asked my cardiologist why I was walking like a crab (ataxia) and he called in to the neurological team and there was my diagnosis. I am still on my feet, albeit rather shaky at times, and use a stick and a walker. I just wanted to say that MS is not a death sentence, it is something that you learn to live with on a daily basis. Good days and bad days but still on the right side of the grass. Hope this has helped somebody, remember, do your own research and make your own decisions based on information you have received and digested.

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.

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.

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.

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.

QUESTION

What kind of disease is multiple sclerosis? See Answer
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.

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.

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).

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!

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.

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.

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.

SLIDESHOW

What Is Multiple Sclerosis? MS Symptoms, Causes, Diagnosis See Slideshow
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.

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.

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.

Published: July 29

At age 39 years I started to get a very itchy left arm for weeks, then woke up one morning and found my legs very heavy, and tired all the time. I had walking difficulties and tried to carry on with life, but it got the better of me. After many tests etc I was diagnosed with MS. I have tried many drugs, but I don’t take betaferones. I continue to live my life on a day to day bases as MS is unpredictable but I do try.

Published: July 28

The onset of my MS came gradually over a 4 month period of time. It started with the feeling that I was walking on marbles. From there it progressed to numbness in my toes and progressed to my feet. I thought I had a lower back problem and went to see a chiropractor. I was treated by this doctor for 3 months. The treatments included heat and spinal manipulation. I finally figured out that I was feeling worse when I left her office. I contacted a friend of mine who is an MD. He suggested based on my symptoms that I see a neurologist. The numbness had continued to move up my legs and I also began having shocks through my body when I bent my head forward. The neurologist hospitalized me the same day of my office visit and began all of the tests required to diagnose MS. This included full spinal and brain MRI and a spinal tap. Needless to say, all of the tests indicated MS. This was strange. I have always been an active person and had completed 2 half marathons the two prior years before being diagnosed. I believe mine is progressive since I never go into remission. I am treated with Tysabri which is not approved for progressive; however, it has helped me since I have no additional active lesions after one year.

Comment from: renehi59, 45-54 Female (Patient) Published: August 20

My first symptom was an electrical shock from the right side of my leg going straight up to my arm.

Comment from: msgoetz, 55-64 Female (Patient) Published: August 08

It began with headaches, joint pains more like numbness pins and needle feelings and prickly sensation. I also had a lupus diagnosis. It was my rheumatologist that said something else was going on, lupus was not my major issue. My symptoms became worse and I loss more and more feeling.

Comment from: Duchess, 65-74 Female (Patient) Published: July 17

I was feeling very fatigued and passing out fairly frequently. I felt considerable weakness in my joints, and loss of appetite. I have lost weight over the last few years. I also am very anxious a lot of the time. As the years go by I have had numerous falls and now suffer with peripheral neuropathy. I also have chronic pain in my joints.

Comment from: thatagirl, 45-54 Female Published: May 20

Optic neuritis was my first symptom. I was working and I slammed my hand in the sliding side door of my work van; it shut on my hand. I went to the hospital because it was really bleeding. I received a tetanus shot and stiches. The next day, I felt like a train hit me. I felt dizzy, had fatigue, and major vision problems. I could not even see out of my right eye (the optic neuritis). I still don’t know exactly what caused my flare of symptoms – the sudden trauma to my hand or the tetanus shot? I now will not get another tetanus shot! Too scary! Sudden trauma to the body was a huge factor. I hope my story helps someone.

Comment from: Coppertop, 45-54 Female (Patient) Published: April 17

I was just diagnosed at 46 years of age. My twin sister was diagnosed at 29 and my father when he was 29. At Christmas, I fell down the stairs at work and separated my shoulder. While going through therapy, my arm went numb and they sent me for an MRI to rule out a pinched nerve. I got the call less than an hour later that I had active lesions on my cervical spine and inactive ones on my brain. I’m having terrible pain issues after two rounds of IV steroids. No relief. My sister and Dad have very different courses than me. Right now, I’m waiting to start on Copaxone.

Comment from: [email protected], 45-54 Female (Patient) Published: March 12

I was diagnosed 7 months ago after optic neuritis . Treated for 3 days solumedrol, 1000 Mg After a brain scan , lumbar puncture, MRI ,neck and spine scan I had a diagnosis in 34 days! I was 53 years old. Have Always had problems with heat ,would sweat almost constantly to the point of dehydration. Only my head and neck sweat badly. Left leg and foot burning, tingling,jumping, leg drag that gets worse with fatigue .Memory problems, skin problems.Never got full vision back in left eye....it just mostly looks silver like heat burning on blacktop. Taking Gilenya.

Comment from: Denise, 45-54 Female (Patient) Published: March 05

I was diagnosed in 1982 after losing the central vision in my right eye. My lousy "co-ordination" throughout my childhood and a "pinched nerve" at age 16 in my right arm was attributed to MS.

Comment from: ToniM56, 45-54 Female (Patient) Published: September 02

I thought I had an ongoing inner ear infection, and I found out I had relapse/remitting multiple sclerosis.

Comment from: Hobojo, 55-64 Male (Patient) Published: September 02

I was 11 years old when I was diagnosed with multiple sclerosis. The pain was so great in my legs and feet. Like others, MS in kids was not heard of when I was diagnosed, although a doctor did tell me it was caused by my brain. I’ve had pain off and on since 1961. I’ve also had very little help managing the pain.

Comment from: Mary, 45-54 Female (Patient) Published: August 12

My multiple sclerosis symptoms included double vision, lasting about 10 minutes. I would trip easily. (I did not realize these were symptoms of anything neurological until after my diagnosis). My main symptom was numbness in my left hand and my thumb and two fingers on my right hand. I was examined for carpal tunnel syndrome, but when that failed, an MRI was recommended. That’s how they found my multiple sclerosis.

Published: July 21

I experienced numbness from the waist down and thought I had a pinched nerve. I ignored the strange sensation for a month. I didn't go see a doctor about it until I fell down at the store and couldn't get up again without hanging onto the cart! Needless to say, I was diagnosed with MS within 3 months of seeing my primary physician.

Published: July 08

I have just learned that I have MS. It started with my left side of my bottom lip going numb after a phone call that upset me. The next day it was gone, then that night, just watching TV, the left side of my face went numb. This went on for about four days and then I saw the doctor. He did all the tests that showed I’m at the early stages of MS.

Published: June 30

I don’t have MS but I lost my sister in November from the complications of the disease. She fought a hard fight and was able to live most of the 27 years she suffered a different but good life, she kept a positive attitude. You would never know what her demise might be. And she lived way over the expectancy the doctors had given us. I do believe support and love is a major part of giving these patients the will to fight. Although most of her family stayed strong in our commitment to stand by her side, it seemed most of her friends and lots of family forgot about her and could not deal with it, I always figured if she could, I could. The first symptoms she had was tingling in her hands and legs, dropping things and falling. She first walked with a cane, a walker, for a long while she could drive with hand controls and transfer with her wooden board. Later when the paralysis got worse so did the muscle spasms. She had many remissions but the last 6 years she seemed to spiral downward. She was the strongest most determined person I will ever know. And I hope I can keep her memory alive. And some day be able to find away to keep anyone else from being told they have this disease.

Published: June 30

The first noticeable thing was hip trouble (left side) it was 'clunking' very loudly and painful in certain positions (tightening of tendons) after came the writing, it started to become harder and harder to hold a pen and my writing became more and more 'childish' few months afterward my foot got harder to lift off the floor and all the while I'd experience prickly heat sensation in my lower legs and on the inner part of my thighs. Eventually I had foot drop and my left hand is now permanently clawed with the whole left arm sitting against my stomach. I lift my left leg by the hip (on the tiptoes of my right foot) with every step. If you think there is ever anything wrong. DON'T hesitate to be checked over as I made that mistake and will forever regret it. I'm 21 and the disease got me at 15yrs old. I have 1 child now so all hope is not lost, you will cope if you suffer this slow crippling disease, just keep a positive mind or it will bring you further down.

Published: June 26

My first onset of MS was the optic neuritis 6 years ago, I was 21. It only lasted 3 days. I went to 4 eye doctors, and got tested for diabetes and glaucoma. They all said my eyes were fine, and actually insisted I smoked too much weed and drank too much (at the time I agreed), and that I just needed better glasses for near sightedness, but yeah ok shows how stupid they are. Once it went away, I forgot about it for a long time. 6 years later, (last month) after being severely depressed and fatigued that whole time, the optic neuritis came back again. Finally they diagnosed me with MS. I just had a spinal tap last week, and still haven’t recovered from that either, as I have SEVEREEEE headaches and nausea. Now my right arm is almost useless, it’s completely numb and I also need rotator cuff surgery. Just yesterday, my other hand got slightly numb. The doctors refuse to give me anymore steroids as I’m still having an attack

Published: June 24

I was experiencing extreme fatigue - almost falling asleep as I drove to work, then almost nodding off sitting in front of my computer. I also had sharp nerve pains in both of my hands and once in a while down my shins and knees. Funny, I have numbness now on both hands where the pains were. Also, I sometimes (when really tired) experience numbness on my cheeks - once it even spread to my throat and upper chest. (That freaked me out!) I was diagnosed just over two years ago. (Brain MRI confirmation - four times!)

Published: June 13

I haven't been told I have MS yet were checking it out now. I started with a head cold then I would get chilled then my blood pressure went really low now I'm tired all the time and my toes got tingly.

Published: June 10

I was approximately 23 I became nearly blind in my left eye which was diagnosed as optic neuritis. That condition was treated and went away; however, it still affected me when I would get over-heated in hot weather or in exercise or stressed for any reason. I lived for 12 years with symptoms of MS, unsteady gait, poor memory, fatigue but it was never diagnosed until I had my daughter. Three months after her birth I started getting numbness in my feet and it expanded by day. Every day when I would wake up it had moved up until it settled and I was numb from my chest down. I was then, finally, admitted to the Hospital and diagnosed as having MS without a doubt.

Published: June 05

My first sign of MS (that I paid attention to) was the tingling and numbness in my right thumb for about 3 months. I was diagnosed about 6 months later. That was in 2005 I now use Rebif and have an improved MRI result that was 4 months ago.

Published: May 27

The symptoms that led to my eventual diagnosis were loss of vision and fatigue. The vision loss occurred a few weeks after my first child was born, but resolved without treatment in a few weeks. Seven years later, I lost vision in the other eye. It was at that time that my neurologist suspected that I could have MS.

Published: May 23

My first symptom of M/S was my eye went blurry, which turned out to Optic Neuritis.

Comment from: Worried sister in az, 65-74 Female Published: September 02

My sister was diagnosed with MS about six months ago. At first, the doctors thought she had cancer in the brain. They found four lesions. Then she had an MRI and just had another MRI. Now there are three more white-matter lesions, so she has a total of seven lesions in her brain.

Comment from: CJ's girl, 35-44 Female (Patient) Published: August 26

My first symptom of MS was that my right leg went numb; cold and heat sensations were unbearable. Oddly enough, I was 4 months pregnant at the time. Since then I have had optic neuritis, numbness and tingling all over and I now drag my left leg a little. I also have had some balance problems that seem to be permanent, but I'm not complaining. It has been 20 years now and unless I tell them, no one knows I have it. I have a mild form I guess. My first symptom happened when I was 24 years old. I am now 44 and I am a full time nurse.

Comment from: Verna, 45-54 Female (Patient) Published: August 05

I was diagnosed with MS in 1992 at the age of 32. Six years later, my younger sister was diagnosed with MS at the age of 30. This year, my youngest sister has been diagnosed with MS at the age of 36. Our symptoms are quite different. I have yet to hear of three direct family members having MS.

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