Multiple Sclerosis

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: Romesmyhome68, 45-54 Female (Patient) Published: October 28

I'm still waiting for a possible diagnosis of multiple sclerosis. My symptoms are vertigo, numb right hand and arm, right leg doesn't respond, blurred vision in my right eye, falling over, and balance is off on the right side - it feels like I'm tipping. Also my right side of my face feels like it slides down my body, and I get pins and needles in my face, head and arms. I get hot water feeling in my left foot, exhaustion, and mood swings but MRI was clear. I am waiting to see the neurologist now.

Comment from: peyton, 55-64 Female (Patient) Published: October 01

I have been diagnosed with multiple sclerosis in 2015, and I was a woman of 50. They put me on Rebif which I took until 2017 and was switched to Copaxone. I had two relapses on Rebif, none so far on Copaxone. I do notice my balance is getting worse, and my memory, as well as having erectile dysfunction and spasms.

Comment from: Sarah, 35-44 Female (Patient) Published: August 21

My symptoms of multiple sclerosis are headaches and aura migraines, trickling water sensations on legs and top of head, random bouts of nausea and vomiting, vertigo, numb extremities and primarily in my pinkies. My arms would feel dead asleep upon waking up. I had horrible hot knife like pain across my forehead that lasted three days. One pupil sometimes would be larger than the other. I also had dizziness, bad fatigue, urgency issues, tired tongue and hand tremors. I lost the ability to whistle and handwrite at one point. My symptoms started at 16.

Comment from: Hammy, 65-74 Male (Patient) Published: August 12

My multiple sclerosis began with pain in the back of the thighs 5 years ago but now the pain has changed to a horrible sensation almost like a tickling feeling.

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

My symptoms of multiple sclerosis are, my whole body would have a tingling feeling from head to toe, I would feel like that for about an hour, and then I would have intense pain.

Comment from: woodz1491, 25-34 Male (Patient) Published: July 02

My multiple sclerosis (MS) symptoms started when I was about 14 (29 now) and has increased slightly in severity with new flares. My symptoms are short-term cognitive impairment, confusion, slurred speech, central vision loss and auras, numbness and tingling in my left arm/hand and left side of face. I never experienced weakness or loss of balance. Last week an MRI revealed 1 single lesion on the right side of my cerebellum. Neurologist says my history is 'very indicative of MS' but is still not entirely convinced by 1 lesion. I guess we will find out soon enough!

Comment from: Deanna, 45-54 Female (Patient) Published: June 25

In 2015, my left side became numb. I had no brain lesions, just 1 on my cervical spine, diagnosed as transverse myelitis, idiopathic. In 2016 I had increasing pain, fell once, and MRIs showed white matter on brain, weakness in legs, still no diagnosis because I didn’t have lesions on the brain. In 2018 I had a complete hysterectomy and was still in lots of back and hip pain with fatigue. I convinced my gynecologist to do some specific blood tests and she did. In 2019 MRIs showed at least 4 new lesions. I was finally diagnosed with multiple sclerosis.

Comment from: Keshia, 35-44 Female (Patient) Published: March 29

Numbness in my leg was my symptom of multiple sclerosis.

Comment from: Evan, 45-54 Male (Patient) Published: September 13

I was diagnosed with relapsing multiple sclerosis one year ago by the Department of Veteran affairs. I experience several symptoms that come and go after a couple of days. I recently lost my eyesight (left eye) and developed weakness in the left side of my body. Eyesight came back but not the left side mobility. Muscles of my left foot are weak, making it hard to walk in a normal heel-toe pattern. As a result, my foot drags on the ground when I walk.

Comment from: Barley79, 55-64 Female (Patient) Published: January 20

My multiple sclerosis (MS) symptoms began in the 1990 following hospitalization for Ramsay Hunt syndrome and a few months later pneumococcal pneumonia. The following year both parents died young, with cancer so, stress levels were high. My symptoms continued as before Ramsay Hunt with balance issues, numbness, tingling in legs, face and arms and extreme fatigue. I also had some visual problems. All diagnosed as myalgic encephalomyelitis (ME) but largely ignored by my general physician who did not support ME; termed it as a general anxiety disorder. I dealt with all issues alone. I had stroke in 2016 and several MRIs and new neurologist input diagnosed MS and never ME. I have been referred for disease modifying treatment but will be requesting much more information about this before making any decisions, since I remain wholly alone with my diagnosis and have received little to no care as yet.

SLIDESHOW

What Is Multiple Sclerosis? MS Symptoms, Causes, Diagnosis See Slideshow
Comment from: Newly diagnosed, 45-54 Female (Patient) Published: March 03

At age 47, I started having weird dizzy spells that would only last 10 seconds or so...it felt like someone was sticking their finger in my right ear and giving me a little shove to the left. This lasted for about 2 weeks, until finally one day I had a horrendous dizzy spell in which the room was spinning like a carousel AND a Ferris wheel. Any movement made me vomit. I lost most of my hearing in my right ear that day. Went to ER and was diagnosed with benign positional vertigo. The CT scan was negative. By the time I saw an ENT doctor 2 weeks later, I still had no hearing and the dizzy spells, though milder, were still occurring daily...I always felt as though I was being shoved to the left, and had difficulty balancing during those brief, frequent episodes. I was finally sent to an ear specialist who offered to cut the nerves in my ear (which would remove ALL hearing, instead of just 70%) but agreed I should see a neurologist before doing something that drastic. Also for 6 months prior to the first dizzy attack, I had undergone a shoulder surgery, on the left side, which just didn't seem to want to heal right. No matter how hard I tried, I just couldn't get my strength back on that side. My pinky and ring finger were numb, but I assumed that was from the surgery. I had fallen on the ice and undergone a knee (ACL) repair as well, and had very decreased sensation from the knee down to the ankle. I assumed this was related to the surgery. Later that summer, the tip of my tongue went numb (couldn't explain that) and then one day putting on eye liner, I realized parts of my face were numb as well. When I finally got in to see the neurologist, he looked at the MRI report... (which 3 other docs had access to...and I had pointed out that it SAID "numerous hyper-intense areas which could represent a demyelinating disease" to ALL of them and was pooh-poohed) the neurologist gave me a quick physical exam and diagnosed me right away. Here I had been attributing the numbness to the surgeries, when it was probably the MS all along. My whole left side is weaker than my right. I have always been clumsy to a degree. Still don't have my hearing back on the right. Probably never will. The other doctors were waiting for the optic symptoms to appear...they never did. Hope this helps!!!

Comment from: seasalt, 65-74 Female (Patient) Published: September 22

I had coordination problems and had difficulty walking. I would get "real tired and my speech was like I had had a stroke" then it would get better. I will be pretty good and then have a part of me that gets very touchy. I sometimes could burn myself and not even feel it. I had a nerve test for a possible pinched nerve and they did the test 4 times. They said I had only 60% of my nerves functioning and called me superwoman, because I walked into their office, upright and reasonably normal. The test put me in a weakened condition but I did walk out the office without much help. I can't be around many insecticides because they bring on the symptoms and can put me down. I was down once for 8 months. We figured I probably had this since age 13 or so, but now I am 65 and still going. Good vitamins help a lot. And Limu gives me energy, so I can go even when the symptoms are there. Doctors were killing me, so I sought alternative medicine.

Comment from: ladymonroe, 25-34 Female (Patient) Published: September 22

My symptoms started off with extreme muscle spasms and cramps. It would get worse when I was on my monthly. I was walking and running at the time to lose some weight that I thought was causing the muscle aches, headaches, and the pain that I was feeling in my whole body. One day it got overwhelming. It was August 17th, 2007. I felt like I was getting the life squeezed out of me and my mind was racing the whole time while experiencing difficulty speaking, walking, and trying to control the jerky movements. I was admitted as a psychiatric patient at that time, now it's been two years later and I feel like I am disseminating. I had another attack recently and that is what scared me enough to go to the neurologist. I am still afraid. I want to see it, and I’m interested in the damage that my body has endured. Can't wait to start treatment.

Published: September 10

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.

Published: September 10

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.

QUESTION

What kind of disease is multiple sclerosis? See Answer
Comment from: Loving family, 35-44 (Patient) Published: October 16

I just turned 41 in July. For the last 2 months I have been dealing with numbness on my right side all the way from my shoulder to my toes. My right foot swells up to where I cannot put shoes on. My right eye is blurry, I don't know what causes this, but I also have migraine along with it. I am worried if the symptoms are of multiple sclerosis.

Comment from: Evan, 45-54 Male (Patient) Published: September 12

I have multiple sclerosis relapse and 6 months ago I had loss of fine motor skills on the left side. I am worried if I will recover and have full use of my left side again.

Comment from: Cls, 35-44 Female (Patient) Published: April 23

At almost 42 years of age I woke up missing a quarter of my vision field in each eye. I was diagnosed as having had a stroke but nothing showed until I had an MRI a couple of months later. Three months after that test showed multiple white matter lesions, I was diagnosed with MS.

Comment from: Twinkster, 45-54 Female (Patient) Published: November 30

I am a 51 year old female and may possibly have MS. The left side of my face was numb last year and then it came back again this year. I went in for an MRI and I have about six or eight lesions in my brain. I have optic neuritis. I also underwent a spinal tap and had my blood drawn. I was low on Vitamin D. The neurologist has ruled everything out and believes that I could have MS. He wants me to get another MRI in January to see if anything has changed.

Comment from: Susana317, 55-64 Female (Patient) Published: November 29

My first symptom of MS was when I was 16 years old. The main symptom was about 30 years later when I went blind. I had many symptoms through my life, but wasn't tested for MS until the blindness. I've had problems with fatigue and balance almost all my life.

Comment from: Nurseniecy, 45-54 Female (Patient) Published: November 27

I was very tired and very dizzy! I had severe pain in my face and head and I have trouble holding my urine. The summer is my worst time of the year, heat is not my friend and I’m always cold. This disease is very unpredictable and frustrating!

Comment from: DEE, 13-18 Male (Caregiver) Published: March 13

My friend showed symptoms of MS. He was unable to walk and he was experiencing numbness and tingling feelings in his toes.

Comment from: MissBW, 25-34 Female (Patient) Published: November 08

My MS symptoms started immediately after I got pregnant with my first child in 2008. I developed severe pain in my left eye; and I began to lose my vision. After visiting my ophthalmologist, she found nothing and sent me home. I knew there was something wrong and so I kept researching. I returned to her and demanded that she perform a field vision test and a test for optic neuritis on me. After doing so, it was concluded that I did in fact have optic neuritis which is one of many things that are indicative of MS.

Comment from: Jennifer, 45-54 Female (Patient) Published: August 08

At the onset of my MS, I developed complete left side numbness.

Comment from: serenity, 35-44 Female (Patient) Published: August 16

Nine months ago, I had an episode of vertigo while driving. I felt like my car was rolling of the road. It passed after a few minutes. Over the course of 9 months I had other episodes of dizziness or being off balance, but none as severe. I seemed extremely tired and in an intolerant mood. I was exhausted even with more sleep. My short term memory was slightly impaired and I started making lists and setting alarms on phone. Two months ago I starting dropping things with my left hand and seemed clumsy. In July, I was admitted with optic neuritis and I was diagnosed with MS after they found a lesion on my spinal cord.

Comment from: Tilley, 45-54 Female (Patient) Published: May 10

My symptoms were falling down twice in two weeks and then developing what is known as drop foot. This lasted about five months before I saw the doctor, then two more months later, I saw a neurologist. I also had a brain scar and an MRI and a neck x-ray. I also suffer from a feeling like pins and needles in one hand and a feeling like someone is flicking water on my legs. I have been told I have PPMS (primary progressive multiple sclerosis).

Comment from: Youngestof7, 35-44 Female (Patient) Published: May 03

I was just diagnosed with multiple sclerosis. I have been having terribly bad head pains in the middle and rear of my head, so off the emergency room I went and now, here I am.

Comment from: Nanette, 45-54 Female (Patient) Published: March 03

At the onset of my MS, I started dropping things and I had severe fatigue.

Comment from: Justme, 45-54 Female (Patient) Published: January 27

Finally at the age of 54 I have been diagnosed with MS!! The official diagnosis coincided with the after effects of a severe case of chicken pox in 2009. Expecting to find an inflammation in the spinal cord, the neurologist was quite surprised to discover that the chicken pox had in fact affected the MS which had been dormant. While I had undergone many tests and MRI's during the last 10 years, there was no conclusive evidence of MS, even though the MRI's showed lesions in my brain and I was experiencing most of the classic symptoms including: extreme fatigue, numbness on left side of body, poor balance, vision problems etc. It seemed every time I went to the neurologist I would be in remission and pass the tests.

Comment from: peggy, 45-54 Female (Patient) Published: October 06

I was diagnosed with MS at the age of 18. I am now 53 yrs. old. Unfortunately, I actually had multiple sclerosis when I was much younger, but MRI scans and other medical procedures were not available then. I can rememember always being unable to walk without staggering or stumbling. When I went to sleep my arms and hands would always tingle as if I had slept on them too hard during the night. My speech would slur whenever I was tired. I could not tolerate the heat or humidity without becoming extremely fatigued when I was in grammar school. I still have the same symptoms today. When the first MRI scan became available, my neurologist diagnosed me with a brain tumor. After refusing to accept his diagnoses I had a spinal tap and other various tests performed. After two years of medical testing, it was confirmed that I had multiple sclerosis. I have advanced to secondary progressive MS. I am allergic to steroids. I have been taking an interferon drug for over 13 yrs. My neurologist has included plasma pheresis treatments every six months as a booster to help prevent my progression. I have two other family members that suffer from the devastating effects of multiple sclerosis. I have experienced every symptom that MS can cause, yet I am still an active indivdual. I encourage anyone that has multiple sclerosis to never give up hope. Stay as active as long as you possibly can even if you are wheelchair bound.

Comment from: I pad, 35-44 Female (Patient) Published: February 07

Pain and twitching and numbing in right arm where a tetanus shot has been given 3weeks ago. Numbness and tingling in arms, legs, face and mouth and back head, stiffness in neck , no balance, feeling of shaking , cold hands, tired most time, no energy to exercise, bad mood and nervous most of time, numbness in all body, forgetting lots of small things like where I put my keys , kind of dizzy, anxiety and worrying.

Comment from: AlaynaMarissa908, 19-24 Female (Patient) Published: August 26

One month after I was diagnosed with optic neuritis I was diagnosed with MS. The disease started progressing fast. I noticed myself dropping things constantly. My hands would just get weak and give out. I woke up one morning and had lost, blurry vision in my left eye. I had very bad back and leg pain all the time. I woke up one morning and I had double vision. I am extremely tired all the time. I have no energy some days and just can't do anything. I also had very bad headaches. My case of MS got progressively worse from the time I was diagnosed, just within the first year.

Comment from: Creeps, 25-34 Female (Patient) Published: April 22

Optic Neuritis was the first recognized symptom of my MS. However, looking back over the years I've had many symptoms. I plan to use alternative medicine. I was just diagnosed officially this week after about a year of tests.

Comment from: 65-74 Female (Patient) Published: February 25

I was 65 years old and one day while walking warm up laps at the health club my left leg collapsed. The doctor thought it was a meniscus tear and performed arthroscopic surgery to repair a small tear. When that and physical therapy failed, I saw a neurologist and was diagnosed with PPMS. About the same time I lost voice pitch in the high range. I couldn't scream if I were being attacked by a pack of wolves. That was two years ago and since then I have developed weakness in my left arm and some foot drop in the left foot.

Comment from: poppyandbuttons, 35-44 Female (Patient) Published: February 08

Numbness in both feet, which after a few days worked its way up both legs.

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