Patient Comments: Multiple Sclerosis (MS) - Diagnosis


How was your multiple sclerosis diagnosed? Submit Your Comment

Comment from: Teacher Barbara, 75 or over Female (Patient) Published: September 25

Two and a 1/2 doctors diagnosed my multiple sclerosis. My aunt had it. I had fatigue and leg pains, and couldn’t drive my car. I had trigeminal neuralgia, six weeks’ hearing loss, and difficulty walking. Sight and hearing are weaker. TV speeds sound and picture. I’ve had to pace my entire (normal) life. I was diagnosed by internist, vein specialist, and hospitalist. The neurologist says tests shows age related lesions. My research has convinced me it is MS.

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

I awoke one morning in 2010 just prior to my 30th birthday with symptoms of stroke. Being a registered nurse, I knew my symptoms weren't typical. I couldn't control my arms, had no balance, couldn't see straight ahead (my face was literally missing in the mirror), freezing cold on one side, and had no taste sensation. Symptoms were so severe that stroke or brain tumor were top of the list for the doctors when I got to the emergency room. MRI showed neither, but many lesions and with brain stem involvement and swelling. Symptoms actually worsened with difficulty breathing, loss of speech, and seizures the first month, but gradually improved over 6 months. That was 6 years ago, but I am still here. I had to leave nursing this past year due to flares/progression, but now able to focus on quality of life and family. I have also stopped all multiple sclerosis medicines due to side effects. I am not sure if it is good or bad, but right for me.

Comment from: policy, 55-64 Female (Patient) Published: December 30

I was diagnosed with MS (multiple sclerosis) when I lost total sight in one eye from optic neuritis. I had an MRI which confirmed what I had suspected for years - I had MS. If you think you have it, seek another opinion if the doctor you see doesn't believe you. I went back to original doctor who still didn't think I had MS; until he saw the MRI. A small victory, since I was the one with MS and not the doctor. Get a second opinion, your instincts just might be right. It started out with numb hands, the doctor thought it was crimped spinal cord.

Comment from: TeacherBarbara75, 75 or over (Patient) Published: June 12

Since I originally wrote my symptoms, saying my aunt had multiple sclerosis (MS), my daughter has also been diagnosed and is treated at a major medical center. The reliance on MRI lesions is keeping patients from needed treatment. Doctors like the MRI because it shortens patient encounters and increases profits, though they know between one in 10 to 20 patients show no lesions. Hospitals, practices, and manufacturers are heavily invested in MRI machines.

Comment from: sknarf, 45-54 Female (Patient) Published: January 20

I was diagnosed with multiple sclerosis in 1995 after a 2nd bout with optic neuritis (right eye). Same neurologist/same treatment (Avonex) until just last month! So many other doors are open since seeking a specialist. Starting on Tysabri in the next couple of weeks. Never give up!

Comment from: LouLu, 45-54 Female (Patient) Published: August 28

I have yet to be diagnosed with multiple sclerosis and I am so frustrated and I feel like giving up. I'm so tired and weak it's so depressing, and I have major depressive disorder (MDD) also.

Comment from: riya, 25-34 Female (Patient) Published: August 27

I have been diagnosed with mild multiple sclerosis.

Comment from: melissawesley, 45-54 Female (Caregiver) Published: January 10

Her multiple sclerosis was diagnosed with an MRI spinal tap and an optic eye exam.

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

The 2nd neurologist got it right.

Comment from: mhle, 35-44 Female (Caregiver) Published: April 22

My 43 year old female friend loses her sight in her right eye, sometimes the left eye as well. She is very fatigued (she use to run half marathons), has nausea and headache. The doctor doesn"t think it is multiple sclerosis (MS), and ran tests to rule out a million other diseases. She had MRI done which shows nothing abnormal. She suffers daily and I don"t know what to do. I just have a feeling it is MS, she shows all the symptoms.

Comment from: 26+, 45-54 Female (Patient) Published: May 20

I was diagnosed with MS at age 19, more than 25 years ago by my eye doctor, the first doctor I went to. In that time, water has been found on Mars, but no cure has been found for MS, cancer, arthritis, or Alzheimer's. Does anyone have their priorities straight?


What Is Multiple Sclerosis? MS Symptoms, Causes, Diagnosis See Slideshow
Comment from: RKelley, 45-54 Female (Patient) Published: May 17

I saw two primary care doctors, one infectious disease specialist, and five neurologists before I was diagnosed. I actually figured out that I had MS before the doctors did. I'm a pharmacist and did some online research. I am still amazed at how difficult it was to get a diagnosis. The first three neurologists wanted to call me an 'anxious female.’ The last two neurologists were MS specialists and diagnosed me with 'probable MS' and then MS after watching me for a year.

Comment from: wandabond2000, 55-64 Female (Patient) Published: April 02

I went to seven different doctors until I finally found one who would listen to me. She referred me to a neurologist. After five MRIs and two spinal taps, they found the spot on my brain. I had been having MS symptoms for more than 10 years before I actually knew what was wrong with me.

Comment from: reddwine, 65-74 Female (Patient) Published: February 18

I’m just turning 65 and have had back problems for years. I went to five different doctors over the years and finally the fifth doctor x-rayed my back. The results were startling. I would Google each coded diagnosis in "doctor talk" and all I could do was cry. I’m going to a Neuron Surgeon to get -I’m guessing- an MRI to find out if I have MS. Like my doctor said I probably had it; I hope I can begin to treat this illness with medication and others exercise which can help.

Comment from: msgoetz, 55-64 Female (Patient) Published: August 02

I honestly went through over 100 doctors if not more. I suffered what seemed to be a stroke but was told it wasn't a stroke. I found out in 2005 through a spinal tap that I had MS.

Comment from: lulu, 65-74 Female (Patient) Published: March 27

I saw at least eight doctors before being diagnosed with MS. I was told everything from “possibly fibromyalgia” to "you've got me puzzled" by a neurologist. Finally, I was diagnosed after receiving the evoked potential test in 1996.


What kind of disease is multiple sclerosis? See Answer