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#TheDayIWasDiagnosed: Stories From Real MSers About Their D Day

 

 

Getting diagnosed with multiple sclerosis is one of those moments in life that you'll never forget. It's much like the assassination of JFK, 9/11 and Miley Cyrus' VMA performance in 2013 - you know where you were and the horror you felt seeing the news.  

 

While we are all unique snowflakes with our own individual stories, we are still part of a collective MS experience. And we wanted to know your specific experience. Why? Because we believe that sharing your story is beneficial not only to you but to others as well. 

 

Imagine a new MSer stumbling upon a post about a diagnosis and feeling more understood and less alone. Imagine that person feeling better about their future because others came before who survived the experience. Imagine that person feeling more hopeful about their future. 

 

We've imagined it and that is why we do what we do. Read on to learn about five peoples stories (mine included!) to see how the day of a diagnosis can seem tragic but life after can anything but. If that's not inspiration, we don't know what is. 

 

The Engaged MSer
 

I was 27 years old, engaged and planning my wedding. One day, I developed a pain in my right eye. At first I ignored it (because wedding planning, duh) but as it persisted through the week, I decided I needed to see my optometrist. I previously worked at an optical store so I scheduled an appointment with my favorite doctor, Dr. Block at Grand Central Optical in midtown Manhattan.

 

Dr. Block examined me but could not see anything wrong with my eyes. But that didn't mean nothing was wrong. "You may have optic neuritis," he said as I took out my phone to Google it. And then "Don't google it. You'll drive yourself crazy." He then sent me to his ophthalmologist.

 

I went the next day and endured a series of eye tests. The doctors were kind and after my series of tests were over, the ophthalmologist recommended I go get an MRI, STAT, I had optic neuritis and possibly MS. M what? Luckily, they had an office in mind and so I took a cab to get my MRI. It was quick and the results were done in a New York minute. (10 minutes actually, but that is quick I now realize.)

 

I went back to the ophthalmologist and this is where I was told I had MS. I was then told I should go to the ER immediately to treat my eye. At this point I was glad I knew what was wrong with me but I was also freaking out. I was crying and my fiancé came to Manhattan to take me to the ER. 

 

First we had dinner (hello denial, nice to meet you) and then headed to Brooklyn's Methodist Hospital. It was close to home and seemed like a good enough option. I was in the hospital for five days on IV steroid treatment. At some point I lost all vision in my eye and referred to myself as Cyclops. Making jokes it how I got through the experience. 

It's been three years since I was diagnosed and I've seen countless doctors who all tell me the same thing - that I have MS. Not all doctors are created equally and I'm glad I finally found someone who is kind, understanding and empathetic. That is not always the case with neurologists but I believe you should search until you find "the one" for you. 

Living with MS is uncomfortable because really, it's a chronic illness. We don't wake up wanting this for ourselves or others. But knowing what is wrong and having a supportive group of doctors, friends and colleagues who understand makes a huge difference. Search until you find those people is my motto. You deserve it. - Diana Frustaci 

 

The Athletic MSer 
 

I woke up on July 1st, 2012 with numbness around my tailbone area that spread throughout my stomach after a few hours. It was a Sunday so my doctor’s office was closed and the on-call physician directed me to the Emergency room. They took my blood and the tests came back OK. The next step was to do an MRI of my spine, which too came back normal. Hours later I was released and told to call my family doctor the next day.

The next day the numbness had spread up to my chest and legs.  My feet were also very tingly. Back to the ER I went!  I had another MRI (this time with contrast) of my spine including the lumbar area. That too showed nothing.  I was released again and was told to make an appointment with a neurologist for the next day. Then, my neurologist told me I must have injured myself playing ice hockey. When asked about the numbness I felt, I was told I was fine; it was all anxiety and it was all in my head. He did prescribe me oral steroids... just in case.

 

A few days later I started getting tingling in my fingertips, which then prompted an MRI of my C-Spine (Neck).  This showed a lesion, which led to an MRI of the brain.  This too showed a lesion.  My neurologist all of a sudden went from “It’s all in your head” to “It's MS, here pick a medicine” and handed me pamphlets of DMD’s. 

 

Every question I asked about other alternatives were immediately shot down. Could it be Lyme disease?  “NO!  Pick a med ASAP”. Talk about a roller coaster ride of emotions.  The negative thoughts rushed through my lesioned mind: ”I’m going to be in a wheelchair…or worse! How was I going to take care of my then 5 year old son?” Suffice it to say, I was bummed out by the news. 

 

I quickly started doing my own research and found online forums.  Talking to others affected by the disease helped me the most.  I realized MS isn’t a death sentence and it’s manageable. There are options to help slow this disease down. We can fight this thing! I switched Neurologists and now see an MS specialist. I couldn’t have asked for a better experience. He was able to sit down with me and explain why he too thought it was MS and explained each treatment option with me. 

 

I started on the oral pill Gilenya in February 2013 and have not had felt any side effects thus far. The numbness I initially felt has dissipated. My hands still feel a little funny sometimes but other than that I feel great and I stay active. I play softball once a week and I volunteer at MS events as much as possible. I participate in the annual 5k walk as well as the 30 mile challenge walk every year. I also plan to get back to playing ice hockey once the season begins. 

 

When I tell people I have MS, they always respond with “I’m sorry to hear that…”.  I tell them “Don’t be…I’m not.  I have MS for a reason, and I am fighting this thing”.  I received the most benefit from talking to others affected and I want to help others as well.

 MS stops connections but connections stop MS.  This is why I started the group Must Stop MS!. I want to build connections, spread MS awareness, help others, and fight to stay healthy.  I do not want anyone else to feel the same way I did after being diagnosed.  

My pages can be found on Facebook and on twitter at @MustStopMS.  Be sure to also check out #ChatMS on twitter every Monday at 7pm EST!  Its hosted by myself and my partner in crime Keep S'Myelin.We'd love to see you there. - Randy Patrick

 
The Caretaker MSer 
 

I was a caregiver to my younger brother Joe, who also had MS, for 10 years prior to experiencing my first symptom. In 1995, after falling down five consecutive times in 15 min, I assumed it was MS. This was the same first symptom my brother had experienced in 1985.

 

My top priority was taking care of Joe but since there were no medications to treat MS in 1995, I kept my diagnosis a secret. I started to make up stories about why I was walking differently and progressed into a life of isolation to keep my secret.

 

I was officially diagnosed with MS in 2008, started on Rebif, and immediately notified my employer. Being protected by the ADA, I stayed employed until 2011. Then I went on disability.

 

My brother had passed and now I was caregiver to my mother with Alzheimers. I was a total shut-in until September 2014. That's when I found MyCounterpane. Kate and the MCP family put me back on track. By January 2015, I had friends for the fist time in a long time! I started going to an MS Support Group a fellow MCP suggested and it has made all the difference. - Chris Guzikowski 

 

The High School MSer 
 

The day I was diagnosed, I was an avid hockey player half-way done with high school. I started to realize my fingers went numb after playing street hockey with some friends. I figured it was because it was cold outside or that I must have gotten hit really hard to feel that numb. 

 

But the numbness never went away. It slowly transitioned to my entire hand and within a week the entire right side of my body went numb.

 

I was 16 years old at the time. My parents first took me to my pediatric doctor, who ended up referring me to a local neurologist. After the doctor couldn't make heads or tails of what was wrong with me, I was told to go to the ER.

 

My parents took me to one of the best hospitals of NYC. Mt. Sinai Hospital. They performed a series of tests, from checking for lyme disease to even HIV. I was later admitted to the pediatric neurology part of hospital.

 

I was a boy in my teens who was born in Guatemala. There was no way it could have been MS. The doctor said it must have been parasite I picked up while I was living in Guatemala. "MS is just for women over 50 who were born in the north east," he said. Then he pumped me up with oral steroids for six months. It was not fun at all but at least I started to get sensation back on my right side.

 

About a year later, I lost all vision in left eye. I went back to the neurologist of Mt. Sinai. I also saw an optometrist. Maybe it was MS? After seeing few other neurologist and MS specialists, I ended up in Brooklyn's Maimonides Hospital where an MS specialist said it was definitely MS. I was prescribed Solumedrol to regain my vision.

 

Later I even went to another doctor to get second opinion. I got another MS diagnosis. I was turning 18 years old and now two doctors confirmed that I had multiple sclerosis. 

Like many other MSer's, I have gone through a handful of doctors. I feel very fortunate to now see a neurologist that also has MS. He knows the disease on so many levels and knows what I go through on a daily basis. This has made all the difference to me and my health.  -Luis Torre

 

The Scared In Denial MSer
 

My first day i found out i had MS i was with my wife in NM. I was scared and in denial. - Lexi

Where you diagnosed with MS? We know you know this story and we'd love to hear it so we can connect you to others. Please post it on MyCounterpane or below. 

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