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Diagnosis (Part 1)

vision problem

“I trust that everything happens for a reason, even when we’re not wise enough to see it.” – Oprah Winfrey

(2000)
Something weird was happening with my vision.

No big deal.

Periodically, I felt a brief jolting pain shooting from my left eye.

Transient pain.

Lately, after my jogs in the park, my vision would get unusually dark.

Annoying.

One day I haphazardly covered my right eye with my hand and discovered: I could not see out of my left eye.

Frightened!

A few days passed and the problems persisted. Deep inside I knew something wasn’t quite right. But, I was in nursing school and at that point in my life nothing was more important. I was extremely swamped with course work and all of my time was spent studying and going to class.

Everything came to a head when one day I walked face first into a cinderblock wall in my dorm room. I just didn’t see it. The most embarrassing part of the wall fiasco was my boyfriend, Tommy, was visiting me and saw the entire scene. We kind of laughed it off and even though he already knew I was clumsy it was still somewhat humiliating.

After my mishap, I attributed my unusual vision problems to that unintentional march into the wall. But to tell the truth I had been having vision problems for a while, just not that severe. I was using denial to hide it from everyone including myself. This will not be the last time I use denial.

The pain from hitting the wall was so relentless that it was difficult for me to focus on my daily routines. Eventually I conceded defeat to the throbbing discomfort and the in and out fading of my eyesight to sequentially usher myself to the eye doctor. That trip to the eye doctor would mark a turning point in my 25-year existence.

Before I Knew Anything About MS

Loving College

I had an appointment for the next day. I guess that is one of the perks when you live on campus at a medical school. The night before the appointment, while getting ready for bed, I learned how difficult it is to function with severely impaired vision. I got so frustrated with getting undressed that I slept in my shirt and underwear because I couldn’t find my nightclothes.

By morning I was relieved that my vision was better and the pain had subsided. My sight was still blurry but at least it wasn’t going in and out. I almost canceled the appointment but decided to keep it. I think I did because a part of me was still scared.

I felt like that guy in the book “Dead Man Walking” during my journey to the doctor’s office. Once I got there I nervously sat in the waiting room for my name to be called. I tried to read one of the magazines but I gave up because I could barely see the words. After about twenty minutes they called me to the back. Once in the room the nurse asked me what my problem was. I told her I was having some trouble focusing my eyes. Then I confidently announced I most likely had a retinal detachment. I had just studied this in class so I just knew that analysis was correct. The nurse said she would tell the doctor my diagnoses. But me being me, I insisted she write it down on my chart to ensure he saw it.

Minutes later, the doctor entered the room and this time I announced my supposition so he could hear it. He just smiled, then started his exam and concluded that I did not have a retinal detachment. I couldn’t believe my diagnosis was wrong but still it was great news. At the closing of the very quick exam, he pronounced I had tired eyes. Whatever that meant.

He said I needed more rest and prescribed me some eye drops. Relieved, I left the exam room with the intentions of going back to my dorm. I was almost out of the office front door when I remembered my fading eyesight from a few days earlier. Then I started to think.

What is he talking about? SOMETHING IS DEFINITELY WRONG!

My panic meter began rising. I did an about face and headed back to the exam room. I didn’t even stop at the front check-in desk. My walk became a strut that progressed to a jog. By the time I reached the exam room my panic meter had exploded. I was panting. I burst into the room and found the optometrist assessing his next patient. I desperately squawked, “BUT I CAN’T SEE OUT OF MY LEFT EYE!”

Why didn’t I say that from the beginning, I don’t know but it definitely got his attention.

He looked toward me and seemed to be thinking. Within seconds I could tell a light bulb went off for him. A nurse appeared behind me and the doctor asked her to escort me to another examination room. I waited for what seemed like an hour when in reality it was about 15 minutes. All the disorders and ailments I learned about in nursing school came flooding back to me. I sat there and thought I could have everything from hysterical blindness to cancer. When the doctor entered the room I was fighting back tears and pleaded to him to fix my eye. He examined me again, and then began asking me about my family history. I could barely answer his questions. After about two minutes of his inquiries I again begged him to fix me. He ignored my plea but looked me in my eyes and sternly said, “I need you to calm down and listen to me!” I took a deep breath and softly said, “OK”. While still staring at me he firmly said, “Nicole, I want you to go get a MRI…today!”

Thanks to nursing school I was familiar with that test but I didn’t know why he wanted me to go get one and I was too upset to ask. The optometrist office made the appointment for me and I headed straight to the radiology center to get the MRI scan done. I did the scan at 3 p.m.

At 8:30 p.m. the phone rang. “I want you to see a neurologist tomorrow morning” my optometrist said. “We have made an appointment for you”.

After hanging up the phone I was so nervous because the doctor called me at home…himself!

WHAT?

I knew that only happens when something was seriously wrong.

That night I called my parents in Baton Rouge, LA. I said to them, “I’ve been having trouble with my vision. First, I went to the eye doctor. He sent me for an MRI. Now, I have an appointment with a neurologist in the morning.”

Silence.

I was so distraught that I could barely speak but managed to mumble, “I think it’s something serious.” Again there was only silence on the phone. When they finally spoke my mother said, “What time should we be there?”

The next day my parents and sister drove an hour to meet me in the examination room of LSU’s chief of neurology. With a tone of desperation in my voice I presented my story once again. “I hit the wall face first and now I’m having vision changes. That’s all. Just give me some eye drops! Please!”

He said. “No, it’s the other way around, Nicole. You hit the wall because you have been having trouble seeing.” I didn’t let up. I continued to give him a thorough interrogation offering him alternative diagnoses and questioned his ability to interpret my MRI scan. He calmly stood, stepped into my personal space, stared me in the eyes and declared,

“Nicole, I am 99.9 percent sure you have Multiple Sclerosis.”

From that point, the lights went out for me mentally and emotionally. I couldn’t process much more after his official diagnosis. We spoke for another 30 minutes or so but I really don’t remember much about it. I am so happy I had my family there to speak for me because I have no clue what I or anyone else said. It was like my mind shut off. My brain was given too much to process. While the doctor was giving me the facts about living with MS, I was foreseeing my future. I saw visions of me “rolling” in a wheelchair to the Bursars’ Office and withdrawing from nursing school. I kept hearing the tormenting echoes of the doctor’s earlier words, “chronic progressive debilitating disease.”

We left the doctors office not really knowing what to expect but in my mind I was anticipating the worst. Since I didn’t know much about multiple sclerosis all I could think about was wheelchairs and Richard Pryor. I know it sounds silly but at that moment that’s where my mind was.

Once I got pass the initial shock, I underwent the required dose of outpatient intravenous steroids. My eyesight slowly returned to baseline. I went back to class and began running at the park again. To my relief and surprise my initial thoughts did not become my reality at all.

Well, at least not at that time.

The only true difference between that day and the day I got diagnosed was the shots I had to give myself, and the fact that I now know I have multiple sclerosis. I somehow found solace in that. I chuckle now as I remember years ago telling people, “Yes, I have it (MS) but it’s never stopped me from doing what I want to do.”

I completed nursing school and moved in with my boyfriend Tommy. We got an apartment in Metairie, Louisiana and I began my nursing career running through the floors of a New Orleans intensive care unit while Tommy worked at The House of Blues New Orleans. I had 2 relatively “uneventful” years living with MS until I decided to become a travel nurse. Tommy got a transfer through his job and we hit the road. The plan was to travel the United States living in a city for a year or two then moving to another city. First stop, “Sin City” Las Vegas, Nevada.

Continue Reading

My Big Move to Las Vegas

Las Vegas Here We Come

35 thoughts on “Diagnosis (Part 1)”
  1. Theresa Peterson 20 November, 2014 on 1:33 AM Reply

    I like your stories. You are an amazing inspiration. I’m newly diagnosed in July of 2014. It’s been whirlwind chain of events as I am 46 and this monster on my back came out of nowhere. I am very frustrated as I can’t even walk that great in the snow anymore and I used to sled dogs race when I was younger. I’m just trying to find my way now, my dr says I have to cope with life a new way and I cannot find that coping mechanism quite yet. Hopefully some day I can.

    • Nicole Lemelle 20 November, 2014 on 11:38 AM Reply

      Theresa you will find a way because you have to!

  2. Avril 4 March, 2014 on 7:49 AM Reply

    Nicole,your story is the story of so many of us newbies and it feels very similar to my experience. The ole’ Optic Neuritis I have had it at least one more time since I was diagnosed Christmas 2012. The worst holiday ever but thank God for faith,hope and family! I never experienced issues with sight however I had the fatigue and dizziness for years but upon onset of the O.N. it has been like dominoes falling–me falling,numbness,tingling,burning,speech issues. I look forward to seeing your new blog posts on Tuesday! Keep Calm we are MS’ers :)

    • Nicole Lemelle 4 March, 2014 on 4:30 PM Reply

      April, i’m looking forward to seeing you too!

  3. Joe 2 September, 2013 on 7:27 AM Reply

    Newby with MS so hard to say… I was told this spring and got started on meds. I found your site last night and yes I cried with joy. I fill so lost and have no one to truly talk to.Keep up the good work. I am 50 family man and a work all the time. I am thankful that right now all I have is right eye pain some blurr and and very tired sometimes . sorry about typing.

    • Nicole Lemelle 2 September, 2013 on 1:55 PM Reply

      Joe, Welcome and don’t worry my typing is not all that gyre at either! Welcome to the site! I post updated posts on Tuesdays, so sign up and they will be delivered to your inbox. You just got diagnosed? Well, keep moving forward.

  4. Bridget Russo 5 June, 2013 on 10:33 AM Reply

    Hi,

    My mom has MS and I have long suspected that I have it too, though the doctors think differently. I just wanted to come and say that I admire your courage and think that your website is just brilliant.

    take care,

    Bridget

    • Nicole Lemelle 5 June, 2013 on 10:39 AM Reply

      Bridget. Thanks for reading and I wish you and your mom the best in the future.

  5. benjamin wooten 13 December, 2012 on 9:16 AM Reply

    Hi Nicole I was inspired to learn of your plight today and wish you well and thank you for your detemination which gives hope to so many others.And look forward to you getting better and God bless your family. P.S Have you looked in to holistic informaton as well ? Sometimes the source of this illness can be researched to help you also. Agape

    • Nicole Lemelle 13 December, 2012 on 1:00 PM Reply

      Benjamin, Thanks for stopping by. I release new posts on Tuesdays. I haven’t really looked into holistic avenues as much as I should.

      • Kristin Bennett 13 December, 2012 on 3:55 PM Reply

        I found the descriptions in the Gabor Mate book “When the Body Says No” very interesting…I’ve explored a lot into the world of naturopathy, massage, and more, so many ways to improve our health I feel lucky that I was diagnosed way back when 😉 I was in college too, NYC Design school in 2001 when I got diagnosed…was a trip to say the least!

        • Nicole Lemelle 13 December, 2012 on 5:46 PM Reply

          Kristen, Thanks for the heads up on the book. I release new posts on Tuesdays and would love to have you back!

  6. Jim Williams 31 July, 2012 on 5:52 PM Reply

    Amazing!

    I just read Diagnosis (Part 1). I could have written the same narrative about me. Optic Neuritis was my symptom, and it was like looking through dirty water. I told my wife I had issues with my vision last summer during a hot spell. I made the first appointment at the vision center where they could find nothing wrong. My wife, a teacher who had the time and motivation to ride herd on further appointments, made sure further appointments were made (and kept). I wound up with an appointment with a neurologist and after two MRIs, with the diagnosis of MS (recurring / remissive) … bummer. I wanted to deny the diagnosis which is easy during remission. I am now left with weekly injections which make me feel bad for part of one day a week. I follow your blog on facebook and via your emails and when I am feeling sorry for myself, I visit your blog and instantly feel better about things.

    Thanks so much for doing what you do. Please continue, I have you as a new role model.

    • Nicole Lemelle 31 July, 2012 on 7:05 PM Reply

      Jim, Wow those were some powerful words. Thank you so much. I hadn’t thought about that in a while. Yeah I stayed right there for a long long time. Thanks for reading, Thanks for keep coming back!

  7. Kristie 1 June, 2012 on 1:11 PM Reply

    Nicole – great blog! I was diagnosed last summer (although it took 3 different doctors, many long (and sometimes painful) tests before the diagnosis was made. I’ve been figuring out my new normal as well (I blogged about it at http://wp.me/p24ECi-x) and have been determined to not let it stop me from living my life.

    Keep up the great writing – I look forward to reading more!

    Kristie

    • Nicole Lemelle 31 July, 2012 on 7:07 PM Reply

      Kristie, Thank you and way to go. We just adapt and keep going.

  8. lisa schurmann 16 April, 2012 on 9:35 AM Reply

    What a blessing to find your website!!! I recently was diagnosed with MS and can definitely relate to some of your experiences!!! I feel scared for whats to come, but Im sure things will get much better once I start medication, so Im hopeful!

    • Nicole Lemelle 16 April, 2012 on 10:48 AM Reply

      Lisa, I’m glad you found us too! New posts come out on Tuesdays.

  9. Suzie Q 14 March, 2012 on 11:54 AM Reply

    Hi Nicole, I just came across your blog today and your story is so close to mine that it is scary. It wasn’t my eye that first starting giving problems. I actually went to a GP because my back was causing me alot of pain but when he started asking me all these questions about falling and dropping things that I hadn’t even told him about it freaked me out. He walked out of the room, made a phone call to colleage (I know I’m not spelling that right) and came back and said I think you have MS! Turned my world upside down. My second son just turned one and I thought there was no way this was happening to me. I went to Tulane and saw Dr. Stazio who did multiple tests…MRI, spinal tap, and bloodwork and called later that week to say yes I was MS. We must live not too far from each other, I live near Lafayette. It’s good to “meet” you! I will definitely keep up with your blog. I too would definitely trade in my walker and (one bad days – my wheelchair) for no handicap parking!!!

    • Nicole Lemelle 14 March, 2012 on 12:08 PM Reply

      Suzie, thanks for stopping by. I appreciate you reading my story. It’s kind of validating to see someone else go through the same thing, Huh? I think in some way that’s why I write.

  10. Kathy 14 March, 2012 on 11:46 AM Reply

    I had sever pain in my left knee that left me limping around. After a few doctor visits and a few trips through PT… my doctor sent me to a sports medicine doctor who took an xray and a cat scan of my knee and informed me that there was nothing wrong with me.. it was all in my head. Fortunately.. my doctor knew what it took me to get me into her office so she asked ME my opinion. My daughter, in 2007, was in a coma. The first wave of pain happened while walking from my car to her room. I had to drag my leg. It just wouldnt co-operate with me. After explaining this to my own doctor and telling her that perhaps I had a stroke (Im not in the medical field. lol) she said well.. lets find out. So off for another cat scan but this time of my brain instead of my knee. Turns out he was right. The pain WAS in my head with the initial diagnosis of MS. From there it was many more trips for cat scans and a spinal tap. I feel blessed that I can still walk. I was diagnosed with secondary progressive. Here we are… 2012 and I although things are getting harder… I can still walk with a cane. Counting my blessings that I should be able to participate in the MS walk this year! :)

    • Nicole Lemelle 14 March, 2012 on 11:57 AM Reply

      Kathy, Thanks for reading my story. You got a quick diagnosis just like me. I’m secondary progressive now too, but I don’t walk! Good for you!!! What’s your secret?

  11. Linda P 14 March, 2012 on 11:41 AM Reply

    I was diagnosed in December. I was completely blindsided, but looking back it all fits and makes sense. All the falls, and years of feeling out of balance….My family is in denial, and friends keep saying ‘but you don’t look sick’ and cannot understand. It is a relief to go on the internet and find out that all the things I am feeling, and are happening, do NOT make me a freak!

    • Nicole Lemelle 14 March, 2012 on 12:02 PM Reply

      Linda, At least by being a wheelchair, I don’t get the, “But you look,,,,,,” It downplays our experience. Give your family time. I hear sometimes they don’t have the coping strategies that we have to call on immediately. They don’t.
      Thanks for reading, I put out new posts on Tuesdays.

  12. Larry 5 March, 2012 on 11:07 PM Reply

    It was the dreaded appt with the neuro to tell me what he found from the results of CT, lumbar puncture, evoked response examinations. He needs to hurry up; I’m a busy person at work, home, and recreation. He told me everything that wasn’t wrong with me (I’m tapping my fingers… hurry up!) and then he drops the big bomb — MS. Me and my fiancee went home and we hugged each other and cried. It was two weeks before our wedding and I gave her the opportunity to back out of the relationship because of the new unknowns ahead of us. She lovingly declined. That was 29 years ago. I might have a heartbeat but she is my life. I hate MS.

    • Nicole Lemelle 6 March, 2012 on 12:59 AM Reply

      Larry, I’m so you have a partner To go through this with it makes a world of a difference! Thanks for reading my story and please know that I release new posts on Tuesdays. Thanks again.

  13. Kristin 21 November, 2011 on 7:13 PM Reply

    Just stumbled across your blog…I was diagnosed in college too. I remember blowing it off too, though my symptoms were physical rather than vision. Thank you for spreading awareness!!

    • Nicole Lemelle 21 November, 2011 on 8:44 PM Reply

      Kristin, I blew it off for as long as possible! Thanks for stopping by. I release new posts on Tuesdays.
      Nicole

  14. Ann Pietrangelo 7 July, 2011 on 10:29 AM Reply

    Nicole,

    I love the title of your blog, “my new normals.” When we’re young, we believe in normal as we understand it. As we grow and things change, our perception of what is normal also changes, and it keeps on changing. That’s when we realize that change — for the good or for the bad — is constant. MS is certainly a creature of change, and life goes on despite the MS. Kudos to you on the blog. Keep on writing!

    • Nicole Lemelle 7 July, 2011 on 12:53 PM Reply

      Ann, Thanks so much!! Yes, I know you know about change! I have to admit, I asked you to visit the site. I didn’t expect such a nice comment from ya! Thanks. This is huge coming from a published author such as yourself.
      Nicole

  15. Katie Strange 26 May, 2011 on 11:10 PM Reply

    I have to say that this post almost made me cry. I think I almost cried, because that is exactly how I felt, I was totally blindsided by the whole thing. I knew SOMETHING was wrong, but never in a million years would I have guessed MS. Beautifully written. Stay strong!

    • Nicole Lemelle 26 May, 2011 on 11:24 PM Reply

      I just left your site. SUPER cool for stopping by! Thanks for the heartfelt comment. I update the site on Tuesdays, so you are welcome back!
      Nicole

  16. sherri 20 March, 2011 on 9:28 AM Reply

    isn’t funny how those of us who have medical backgrounds diagnose ourselves? i did the same thing… except i was just opposite of you. the morning i woke up marching in place, unable to make my feet move forward, i looked at my ol’ man and calmly said “hm, i think i have MS”

    everyone around me was telling me it was simply neuropathy and would go away, it is this or that.. i knew better…. it took a month to get a solid dx but i knew….

    • Nicole Lemelle 20 March, 2011 on 10:49 AM Reply

      What? That’s crazy. Almost as crazy as me telling the Dr I had a retinal detachment! At least you had it right!!
      Thanks for the read. My goal is to update on Tuesdays. So come back soon!

    • Nicole Lemelle 20 March, 2011 on 10:55 AM Reply

      And, I’m a new blogger. How did you get a picture to pop up by your name?

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