Lawrence's interview
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How did all start?
Near the 1 year anniversary in September of 2002, I work up one morning and it felt like I had just stepped off of a cruise ship. Saw my primary doc later that day, who quickly said it was an inner ear infection.... So, I got Sulfa (which after a few years, I developed allergic reactions to, so it along with Penicillin are off my list..) I also got a script for antivert, which didn't help much and at other times made things worse. Various MRIs and random vestibular disorders thrown around...eventually, I'd adapt and forget about the problem until the following year when it worsened. And, the whole ear infection, etc. would repeat, After a few years, I just stopped seeing my doctor when the problem makes its presence known and just wait until I adapted. I used to walk a lot...so that problem helped.
Do you already have a diagnosis? How long did it take you to get it?
I got the partial diagnosis in July of 2014. Where they had thrown the book at me, and lots of tests, a few not covered by insurance....and concluded that I had spinocerebellar ataxia, on account that I have ataxia and they have tested and ruled out everything below the brain stem. Which leaves the spinocerebellar region. Later I went to the Mayo Clinic in June 2015, where they opted to treat me as a blank slate, except for a discovered brain MRI. Which was the standard new patient procedure that a past neurologist had done, but had reviewed for the first time during my follow up and said everything was normal, while the doctor at Mayo said if I wasn't sitting right next to him, he'd think he was looking at the cerebellum of a 70 year old (vs 46.) So, largely a repeat of testing for everything below the brain stem and concluded with "Mid-line Cerebellar Syndrome"...and that whatever I had was like to be rare and have no treatment or cure, so why bother with trying to get a full diagnosis. I had already done the Ataxia Panel from Athena, and what I was hoping was to get a Whole Exome Sequencing done...perhaps I'll just have to get it on my own someday.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Internal Medicine, a few neurologists, lots of ENTs (at one point a neuro would keep referring me to ENT, where the ENT would say it's not inner ear, and probably something neuro, but the neurologist's answer was that means the ENT doesn't know what he's doing and just refer me to another ENT.... a couple of neurologists later, found one that said given all the ENTs I've seen, its time to look deeper...) Saw an Immunologist (auto-immune?) and a Hematologist (cancer?)...along the way too. At one point, I was told I was just crazy, and it could all be linked to depression. So, eventually I saw a psychiatrist, which I found to be the most useful. As found someone that I could talk to and listened, etc. Plus he was the only person in town that treated my other disease condition. Except we're both moving soon (though I don't know where I'm going yet...)
What has been the most useful thing for you so far?
Going to the NAF Annual Ataxia Conference and meeting other people with Ataxia.
