Awareness and Misdiagnosis
Updated: Oct 12, 2019
As part of the Ataxia Aware project, we are sharing personal accounts of those suffering from Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
This week Lisa Cole has been kind enough to share her story on misdiagnosis and Ataxia.
I was diagnosed in December 2013, first I was misdiagnosed for several years prior. I feel very badly that this misdiagnosis is still going on with so many people.
It was earlier that year (2013) I was doing a stress test on a treadmill and I almost fell. That cardiologist said I should get that checked out. I blamed it on my knees and made an appointment with the orthopedic.
He said my walking is not due to my knees, said I should see a neurologist, he referred me and so I did, finally.
I went to the neurologist; he listened to me and sent me up to Gainesville for a second opinion. Both Drs. agreed and said Spinocerebellar Ataxia. I got my family history and my MRI’s. My Dad, My Brother and my Aunt all have it. My father passed away 4 years ago, he was in a nursing home from not walking (Ataxia), non-hodgins cancer and he had COPD. Anyway, my family suspected my grandfather (his father) had it too due to he was showing signs of it. My family just passed it off as the Antonelli thing. Well, back then, no one was aware of what this was or seemed to care.
I didn’t go to doctors for about 4 years prior to my diagnoses. I was concerned about my walking. I was going to several clients a week, teaching, etc. this was what I did. I teach QuickBooks and how to utilize it efficiently. Now, I do accounting in my office and will log onto my client's books (data) if they have a question I can do all this now without having to go there.
Anyway, I complained for many years about being dizzy (starting in 2005-2007), not feeling balanced, no co-ordination and when I close my eyes, I would feel like falling over or swaying.
I went to an ENT (ear, nose, and throat). I was treated for vertigo, another long word and I was also sent to physical therapy. I stopped complaining, when I saw “CHRONIC ANXIETY” in the office visit notes as one of the illnesses, even though the dizziness and unbalance feeling was still always happening, I stopped going to doctors and just dealt with it.
I didn’t have anxiety, I knew something was wrong.
When I told him what I have (the diagnosis), the ENT dr. said: “that’s not his field”. In a way he’s right. But I do feel all Drs. should kind of know what Ataxia is or possibly some other form of disease, and steer people in the right direction if they can, just don’t pawn it off to anxiety and not for many of us to suffer because some Drs do not listen or really care what you say. I know my body. I knew something was wrong. It is like you drive your car every day and when it doesn’t feel right, you try to explain. Bad analogy, nothing gets fixed until it’s broken. Then things are too late.
Glad I went to the right dr. (neurologist) finally that listened. Got the diagnoses, which is not a good one, but now I have a reason why I have no coordination, balance, etc.
I started a support group here on the East Coast of Florida (the Treasure Coast). Glad to help as many as I can, while I can.
We are going to have our 3rd Walk n’ Roll to Cure Ataxia here in Port St Lucie in Tradition next May 2020. We want to bring awareness to many, many people. I am blessed to have so many great friends that help me have a wonderful and successful event.
Helping bring awareness to this awful disease not only helps with awareness but is helping so many others that can’t do anything and benefits the NAF (National Ataxia Foundation) mission.
I am also trying to get International Ataxia Awareness Day- IAAD (September 25th) Proclamation here in Florida.
I do have another short story from a few years ago, the main topic is that I enjoy doing the fundraisers and that I will continue to do them as long as I can.
MANY OF MY FRIENDS SAY NEVER HEARD OF ATAXIA THEY ONLY HEAR OF IT THROUGH ME.
Please check out the few interviews that I have done. Plus, I am not done with interviews, there will be more to come.
June 2019 youtube: https://youtu.be/u-nsU5pqDqs
Also, started #AtaxiaRocks group on Facebook, sharing all over the world.
Go to www.ataxia.org
We would like to thank Lisa Cole for sharing her inspirational story with us.
If you would also like to get involve and share your experience with Ataxia or other rare condition, please get into contact with us through our social media linked below:
>Beth Soden - Media Coordinator for Ataxia and Me