The Value of Openness by PatientsLikeMe ®

It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over the last nine years has made a difference in her life, and the course of her illness.

A jarring diagnosis

“Some may say I was “lucky” that I had little trouble being diagnosed compared to many who spend years chasing answers to understand why they are feeling as they do. It can be frustrating wondering what’s happening to your body.”

The summer before her diagnosis, Jackie found herself suddenly unable to walk or move her limbs for nearly two full weeks. After diagnosing her with an unspecified virus, her physician prescribed an antibiotic over the phone. The antibiotic didn’t help.

A month later, after experiencing terrible pain in her left eye, Jackie went to an ophthalmologist. He believed she had MS and contacted her physician to request an immediate consult with a Neurologist for a Lumbar Puncture and an MRI.

“This all took place within a 48-hour period and I had my diagnosis immediately.”

Coming to terms with her new normal 

“To say I was stunned would be a gross understatement. My only prior knowledge of this illness had been of my maternal uncle and his hard-fought battle with MS, which he lost while bed-ridden to pneumonia 25 years earlier. I was terrified.”

Jackie, a mother of three children over 15, was grateful that she could rely on her family for support, but still worried about her future and the future of her family.  As an active woman who enjoyed downhill skiing, boating, working in the yard or just tending to her family business, she worried.

“What would this mean for me?  For us as a couple?  Would I be in a wheelchair soon or bedridden young as my uncle had been?  I was only 44 years old and my husband and I had so many plans…so much life ahead of us. What would life be like now?”

Treatment challenges

Following the advice of her neurologist, Jackie began having monthly IV infusions of steroids After 15 to 18 infusions, Jackie thinks that, though an infusion of steroids may help hasten the duration of a relapse, she came out of it with additional bone damage.

“My bones and teeth have been weakened to a point that I am best described as “Humpty-Dumpty” if I were to ever foolishly attempt to ski and fall or merely slip on the ice in my own driveway.”

Jackie began taking a disease modifying drug (DMD) called Rebif that caused flu-like symptoms that severely impacted her quality of life. One week after starting the drug, she experienced full anaphylaxis.  Jackie’s daughter found her unable to speak or breathe properly, requiring an emergency trip to the hospital.

She also tried Copaxone. Since she was still relapsing and paying out-of-pocket, (Jackie lost her insurance because she has a pre-existing condition) the price of $3,500 monthly just didn’t seem prudent.

Finding hope in the forum

“PatientsLikeMe is invaluable to me. I’ve learned everything of value about how to come to terms with (early on), live with and manage my illness through the people I have met here throughout the years. I’ve made some wonderful and lasting friendships and met many in person. I continue to communicate with several on a regular basis both on and off the forum.”

With an overwhelming diagnosis, difficult symptoms and frustrating treatment experiences, Jackie wanted to connect with others who were experiencing the same things.  For Jackie, finding PatientsLikeMe changed everything about her life and how she views herself and her illness.

“There were so many people asking the things that I was too afraid to ask and the number of replies were staggering. I felt like I had finally found a place that I could really belong.”

Jackie found more than social support in the forum. After seeing a photo of a strange red line moving from Jackie’s foot to her calf, and thinking it might be MRSA, lady_express_44 (whom Jackie considers to be the guru of all things medical) encouraged her to go to the hospital immediately. It was MRSA and Jackie’s doctors told her she could have lost her lower leg.

Taking back control

 Being diagnosed with a chronic and progressive illness is perhaps one of the most daunting things that can happen to a person. It’s frightening and for good reason. Jackie’s advice?

“Don’t waste time worrying about things unknown and make your best effort to live for today. Take charge of your illness and make the very best possible decisions for your health. We must advocate for ourselves and our future.”

Jackie also advocates for connecting for connecting with others, especially on a web site such as PatientsLikeMe where there are so many wonderful and knowledgeable people to share their experience and expertise.

“It has made a monumental difference in my life and I believe, the course of my illness. I don’t view my MS as an end to anything but rather as something I simply have and something I’m managing to live with. It truly isn’t who I am, but rather just one more aspect of my being.”

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JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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