For many people with multiple sclerosis (MS), the path to diagnosis can be lengthy and frustrating. 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 to 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.

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.

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Transcript

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, “OK, this is your optic nerves.” I was sent to an ophthal-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, “OK, I’m sending you for a second opinion to a specialist,” and went through the tests, and waited to be seen by the ophthal-neurologist. They posted the results, and it did say I had a lesion on my spine. The ophthal-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.

Getting a Second Opinion

Jenny knew something was wrong when she fell asleep three times at an Alanis Morissette concert. She also experienced a four-day migraine attack with aura, along with 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 that Jenny’s list of symptoms indicated that she had MS. “She said, ‘I’m sending you for a second opinion to a specialist,’” Jenny recalled. “She said, ‘I think you have MS.’”

Sharing Her Symptoms Diary

When Jenny saw the neurologist for a second opinion, she brought her symptoms diary. By that point, the entries included new symptoms, such as the sensation of being on a boat in choppy waters, disrupting Jenny’s sense of equilibrium.

“The ophthal-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, helping her feel less alone when she heard the news. Since then, she’s been able to look back on the process with acceptance of her new normal.

She now shares advice for others 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,” she said. “There’s going to be a new normal, but it’s going to be OK. It really is.”

Join the Conversation

On MyMSTeam, people share their experiences with multiple sclerosis, get advice, and find support from others who understand.

How long did your MS diagnosis process take? Let others know in the comments below.

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