A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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Tuesday, December 13, 2016
An MS patient's story - My 24-Year Journey to an MS Diagnosis and a New Beginning
The road to a multiple sclerosis diagnosis can be a short one or — as mine was — a very long 24 years between first experiencing symptoms and being diagnosed.
My MS journey began around the mid-1980s. Growing up, I was the ultimate jock; I participated in football, basketball, and baseball and later in life, snow skiing, waterskiing, and surfing.
As my symptoms advanced, I attributed my loss of rhythm, balance, and vision to growing older. I would adjust to the change, and my adjustment would then become my standard.
In 2004, however, it became apparent that what I was experiencing was not natural aging. I finally decided it was time to seek medical help and determine what was happening.
From One Specialist to Another
My first stop was a visit to my family doctor. Based on my description of my symptoms, my doctor identified several tests and specialists that could likely help to determine the cause of my lightheadedness, blurry vision, balance issues, and strange feeling in both legs.
My next stop was to see an ENT physician (otolarygologist), who conducted four tests: electronystagmography, which detects involuntary eye movements; posturography, to assess my balance; rotary chair testing, to evaluate my vestibular system (which includes the inner ear, brain stem, and cerebellum); and electrocochleography, which records how the cochlea — a part of the inner ear — responds to sound.
The results of these tests showed there were issues with both my eyes and ears, leading to referrals to physical therapy and to an ophthalmologist.
The ophthalmologist noticed damage to my optic nerve in my left eye. He suspected I’d had optic neuritis at some point in the past. He also thought the cause of my periods of blurry vision might be Uhthoff’s syndrome, the temporary worsening of symptoms related to MS when the body becomes overheated.
In spite of possibly having two conditions related to MS — namely optic neuritis and Uhthoff’s syndrome — I was not diagnosed with MS at that time.
Over the next three years, I visited several more specialists, including a neurologist who discovered neuropathy (nerve damage) in both legs. However, a year of vitamin B12 injections did not help, and several brain MRIs indicated “all clear.”
After four years, I began to do my own research to understand why my symptoms were so hard to diagnose, and I quickly had an answer: Just one search for lightheadedness on the Mayo Clinic website turned up 1380 possible causes! “Wow,” I thought, “they might never figure this out.”