Kelly Kinard has been through it all. She has experienced symptoms of multiple sclerosis (MS) since 1992, supported her former husband when he was diagnosed with MS in 2003 and has been battling melanoma since 2010. Here she shares her experience with the many tests doctors have run to diagnose her conditions and how the diagnoses have affected her life.
“It Could Be MS”
Back in 1992, I realized my whole right side was numb. I went to [my] primary doctor, who referred me to specialists to determine diagnosis. [An] orthopedic specialist ruled-out a pinched nerve. [A] neurologist did an MRI of the brain and an in-person exam. That was the first time I heard, “It could be MS.” They got to the point, several weeks later, [where] they wanted to do a spinal tap. By that time, my symptoms had passed. I opted to not go through the spinal tap as I had heard nightmare stories about that procedure.
In 1997, I was on the phone with my then husband, who was a truck driver. He had been on the road for too long and was very confused about where he was and what exit he had used last. While trying to talk him through it, he wrecked the big rig! Turns out, he was ok, but it effected me badly! That was a Thursday night. By Sunday, I was numb from the waist down!
I was also having issues with my period (fibroids) at that time. [Physicians] didn’t know if the two were related, so they put off any tests until after a hysterectomy in October 1997. By that time, after almost 2 weeks of not being able to walk, the symptoms had passed again.
At that time, I was convinced it was MS! I then began to seek a doctor that would follow through with all the testing to determine my diagnosis. [In 1997, after] several brain MRIs, they did a spinal tap. All were negative for anything indicating MS!
An Additional MS Diagnosis
In 2003, my then husband, started having issues with his vision. MS NEVER crossed our minds, but guess what? He was immediately diagnosed with the chronic disease! [When I accompanied him] to the neurologist that I saw in 1992, [the neurologist] remembered me. While I had no clinical tests showing MS lesions, he put me on [a medication called] Copaxone, along with my husband.
Through the next several years, I had numerous breakthrough episodes. I was seeing a new neurologist, who did MRIs of my brain, cervical and thoracic spine. I had lesions on my cervical spine that they didn’t see before. Most of those episodes were optic neuritis, which they fixed with steroids. Because of those episodes, they switched me to [a medication called] Rebif, in 2006. [This was done] to see if that would work better for me. Unfortunately, I could not tolerate the side effects, so I went back to Copaxone. [The doctor] said, “At this point, it is better than nothing!”
“I Was Diagnosed with Melanoma”
Jumping ahead 4 years, in July 2010, I was diagnosed with melanoma! I am a ginger and fried myself as a kid. I knew I was susceptible to skin cancer. I had started seeing a dermatologist several years prior to 2010. This diagnosis lead me to my most severe MS exacerbation. I was prescribed IV steroids!
Around the holidays of 2009, I noticed a freckle that was not there at my previous appointment in July. I kept watching it. By the spring of 2010, it had grown bigger and eventually turned black. I had a standing appointment in July of each year. I called [my dermatologist’s] office several times and described what I was seeing. I was trying to get in to see him sooner. Apparently, my name got lost in the shuffle, even though I told them it had turned black. That should be a HUGE red flag for someone in a dermatology office, but they still didn’t make sure I got in sooner.
Now, needless to say, I should have been on the phone every hour, of every day, to get in sooner, or [be] seen [by] a different dermatologist. [I] finally saw him July 2010. He yelled at me! Wanted to know why I didn’t come in sooner! I told him I had called. He wanted to know dates and who I spoke with, [but] I could not supply that information. He knew as soon as he saw it that it was melanoma!!
Now, 10 years later, I have been through hell and back! I have had 13 melanoma-related surgeries, brain radiation, radiation to other parts of my body and chunks of my body removed and biopsied. It even showed up in my left breast! I am currently in my second round of Keytruda, which is NOT chemotherapy. They call it that but it is an immunology. That means it manipulates the immune system to fight the cancer from the inside. It is a brutal disease, especially for people [who] have an auto-immune disease like MS!
There are numerous new treatments for MS that they will not put me on, because it leaves you susceptible to cancer. It has been a vicious circle. I can’t do trials for MS because of the melanoma and I can’t do trials for melanoma because of the MS! UGH!
My priority is ALWAYS the melanoma. As my neurologist, at Johns Hopkins said, “MS is a pain in the ass. Melanoma could kill you! Let’s concentrate on the cancer and its treatment, and we will deal with any effects to the MS, as they come.”
Be Proactive and Trust To Your Instincts
You must put your emphasis on any disease that is life-threatening! In my case, the melanoma. You can always treat symptoms of the less-deadly disease, as they appear.
You must be proactive when it comes to your healthcare! Doctors will not call you [to] say, “Hey, how are you doing?” If something doesn’t seem right, trust your instincts and go see a doctor. I learned this lesson many years ago. [I’m] hoping I can inspire others to take control of [their] health!
Kelly Kinard – Windsor, PA
Diagnosed with multiple sclerosis (MS) and melanoma since 1997 and 2010
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