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How a Symptoms Diary Helped My Diagnosis
When Jenny began navigating the diagnosis process, she started keeping a diary of her symptoms to show to the specialists she saw. Sponsored content appears before this video.
00:00:00:00 - 00:00:12:08
Jenny
It’s a very weird and disparate set of symptoms, so if you think something is up, keep a diary.
00:00:12:10 - 00:00:37:05
Jenny
I was misdiagnosed a few times, actually, so I had a four-day migraine which had a blurry eye, but it also had aura. I was instructed to go to the ER. They did a CAT scan. CAT scan was clear, so I was sent to the ophthalmologist who ran 90 minutes worth of tests, which came back clear,
00:00:37:05 - 00:01:03:23
Jenny
so he said, “Okay, this is your optic nerves.” I was sent to an opthal neurologist, and those tests came back questionable. I have optic neuritis, but the MRI was clear, so she was like, “Nope, you do not have MS.” I started keeping a symptoms diary, and that symptoms diary really helped lead to my diagnosis because between that and the blurry eye, I stopped being able to open doorknobs,
00:01:04:01 - 00:01:31:18
Jenny
and I just had an absolutely horrible relapse, at which point nerve pain came to the table. I started falling asleep places and in really silly places. There was an incident at an Alanis Morissette concert where I fell asleep three times. I had actually broken a few dishes. A few months later my primary was like, “Had you been having symptoms?”
00:01:31:18 - 00:02:04:01
Jenny
and I was like, “Yes, yes, I have,” and I started listing them and she was like, “Okay, I’m sending you for a second opinion to a specialist,” and went through the tests, and waited to be seen by the opthal neurologist. They posted the results and it did say I had a lesion on my spine. The opthal neurologist very gently told me that while MS is something that's hard to pin down, looking at the diary, looking at the MRI, looking at the test results, it did look like I have MS.
00:02:04:06 - 00:02:28:16
Jenny
It was on Valentine’s Day. There was nothing saving that day. I don’t know what I would do if I had to do this on my own. I really had some wonderful friends through this. What I wish I had heard when I was first diagnosed: Life is going to be different now. There is going to be a new normal, but it’s going to be OK.
00:02:28:18 - 00:02:37:00
Jenny
It really is. My name is Jenny Gattone, and I’m a member of MyMSTeam.
For many people with multiple sclerosis (MS), the diagnosis process can be lengthy and frustrating. In fact, some people experience symptoms for up to 10 years before being diagnosed.
When MyMSTeam member Jenny Gattone began navigating the diagnosis process, she started keeping a diary of her symptoms to show to the specialists she saw. That way, they could try and make connections to help pinpoint an accurate diagnosis.
MyMSTeam sat down with Jenny, a screenwriter with relapsing-remitting multiple sclerosis (RRMS), to learn more about her diagnosis journey.
Jenny knew something was wrong when she fell asleep three times at an Alanis Morrissette concert. She also experienced a four-day migraine attack with aura, foggy vision, weakness, tingling, and other common MS symptoms. Still, each time she saw a different specialist, she was told she didn’t have multiple sclerosis.
However, her primary care physician was resolute in believing she had MS after Jenny began listing her symptoms. “She said, ‘I’m sending you for a second opinion to a specialist,’” Jenny recalled. “She said ‘I think you have MS.’”
When Jenny saw the neurologist for her second opinion, she showed the doctor her symptoms diary. By that point, the diary included new symptoms, such as the sensation of being on a boat in choppy waters, making Jenny unable to get her equilibrium straight.
“The ophtho-neurologist very gently told me that while MS is something that’s hard to pin down, looking at the diary, looking at the MRI, and looking at the test results, it did look like I had MS,” she said.
Jenny was grateful that a friend had accompanied her to the visit, since it helped her feel less alone when she heard the news. Since then, she’s been able to look back on the process with the knowledge of accepting her new normal.
She now shares advice for others who are going through the diagnosis process. “What I wish I had heard when I was first diagnosed was that life is going to be different now, but not as different as you think it is. There’s going to be a new normal, but it’s going to be OK. It really is.”
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 210,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
How long did your MS diagnosis process take? Did you keep a symptom diary? Share your story and experience in the comments below or by posting on MyMSTeam.
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In addition to taking her medications regularly, Jenny began exercising by walking and doing high-intensity interval training. “I like to hit MS from as many sides as possible.”
Jenny developed what she calls her “Goldilocks checklist” to navigate her triggers and manage them. This requires her to listen to her body and respond swiftly if she notices one of her triggers present.
Torrey Kim
is a freelance writer with MyHealthTeam.
Learn more about her here.
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