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Timothy L. Vollmer, MD
Department of Neurology
University of Colorado Health Sciences Center Professor

Co-Director of the RMMSC at Anschutz Medical Center

Medical Director-Rocky Mountain MS Center
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Brian R. Apatoff, MD, PhD
Multiple Sclerosis Institute
Center for Neurological Disorders

Associate Professor Neurology and Neuroscience,

Weill Medical College of Cornell University

Clinical Attending in Neurology,
New York-Presbyterian Hospital
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Timothy L. Vollmer M.D.
Department of Neurology
University of Colorado Health Sciences Center
Co-Director of the RMMSC at Anschutz Medical Center
Medical Director-Rocky Mountain MS Center

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The Monster Within Me: Living with MS

I had the perfect life. I was well-educated, had a high paying job that I loved, three beautiful kids, a supportive husband, loving family and great friends. I worked hard to get where I was and to me life was perfect.

One day, my whole life was turned upside down. It wasn't caused by a death. It wasn't some careless, risky behavior that I had participated in. It was nothing I did and nothing I had deserved. I simply woke up.

I simply woke up one August morning to find that I couldn't see. My perfect eyesight had suddenly went from 20/20 to zero with absolutely no warning.

In a complete state of panic, I had my husband call every eye doctor in a 20 mile radius until we found one that could see me ASAP. I could not go blind at the age of 29, something else had to be happening.

The eye doctor examined my eyes and threw around a lot of big words, including Optic Neuritis and Multiple Sclerosis. I was sent to directly to a hospital where I received high doses of IV steroids for 5 days. I was seen by a neurologist and had test after test preformed, including MRIs and a lumbar puncture.

No official diagnoses was made. The steroids helped some but I now had blurred vision instead of no vision. I could not see to drive and was not able to return to work. Four months later, after losing my job, I woke up with vision. I could see perfectly out of my left eye but I had lost all peripheral vision in my right eye.

I was allowed to resume driving and found a new job. I thought my life was back on track, until New Year's Eve. While out with friends, picking up some wine to help celebrate the New Year, I once again lost my vision.

This time the test results were different. The MRI showed multiple lesions on my brain and spine. Lesions that would forever change my life. I was diagnosed with Multiple Sclerosis (MS).

Multiple Sclerosis is a debilitating disease in which the immune system attacks the myelin sheath covering the nerves. It can cause a variety of symptoms including vision problems, muscle spasms or weakness, fatigue, memory loss, heat and cold intolerance, insomnia, incontinence, etc..

After first being diagnosed, I lived in a state of denial. I tried to continue on with my life as though nothing had happened. This would work for a while but would cause me to relapse every few months and made it impossible to hold a job.

Though there is no cure for MS, I took medications to help control the symptoms. The medications cost on average $5000 a month and left me with high fevers and body aches.

My family was going bankrupt and I was on the verge of losing my house and vehicles, all because of this thief called MS.

I still tried my best to work. December was an extremely stressful month. I was busy with the normal holiday activities and had the additional stress of trying to pay bills while ensuring that my children had gifts under the Christmas tree.

The day after Christmas, I woke up to find that my entire left side of my body was numb and would not move. I ended up going to the hospital where they initially thought I had a stroke and transferred me to another hospital for speciality care. In the end, it was just the MS again.

It took me 4 months of extreme physical and occupational therapy to learn how to walk again.

I still have to fight MS everyday of my life but thankfully, I have learned to adapt to it and have found a new normal. I am now on disability making less than 1/2 of my previous salary. When my health allows, I do work around 12 hours a month.

I can no longer participate in physical activities such a volleyball. I fall, A LOT! Sometimes, I have to resort to wearing attends and even then accidents still happen.

I can no longer go out with my friends, without planning a day or two of rest afterwards to make up for it. I have to miss my son's ballgames if the weather is too extreme. I can not make plans in advance and sometimes I am so exhausted I can not hold up my head.

I worry every night what the future will bring. Will I be able to see my daughter grow up? Will I be able to dance with my son at his wedding? Will I be able to be an active participant in my future grandchildren's lives?

The uncertainty haunts me but I am grateful for every good day and have learned to appreciate everything so much more.

So to those who read this, please remember life can change with the blink of an eye. Don't take the little things for granted, you may not be able to do them tomorrow. Kiss you kids, take walks, play outside, stare at the stars ,make memories and find the beauty in everything.

The best advice I can give you is live life to the fullest and don't put off till tomorrow what you can do today. Tomorrow is never promised.

Story Source: The above story is based on materials provided by PUCKERMOB
Note: Materials may be edited for content and length

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