I got a diagnosis finally of “Sporadic Cerebellar Ataxia”, and I felt a bit conflicted. The Neurologist said that insurance basically won’t touch the testing for SCA’s unless I can find family members with symptoms (they are very spread out part estranged/and about 1/3 are expired), so that will be a chore. He said even if I can find info to justify a case for a panel, that he feels that knowing is pretty much not helpful, that there is no cure and no treatment.
He therefore said “for now” as far as the title of my diagnosis goes, in case there is any other cause found. He already did panels for Celiac, Vitamins D, B-12, ruled out chemical and environmental causes, but he feels very confident that this is where it will stand. There has been a question about M.S. because of some visual issues, but I think that is the only thing he is questioning, he will see me in four months, and wants me to research family medical history thoroughly and get him any answers, and he will review MRI’s again before he orders more. He just wants to double check everything.
I don’t care what it is called, as much as knowing so I can find something to do about it. If I know, I can at least research. I do wish it could be more narrowed down, and seem to understand that Sporadic Cerebellar Ataxia is a more general category where ataxias that were tested and were unable to be classified with any of the existing 40 odd and counting SCA’s were parked, and those of unknown etiology are parked until they can be further defined, or proven to be genetic, and not secondary to disease or organic causes. Am I correct?
I should be super happy to get a general idea, given that he told me there’s not much to be done anyway, and he’s an expert who has spent most of his life researching this, but I want precision, so I can find out what, if anything I can do.
He spent the post diagnosis part of the appt. making sure I had an adequate set-up (shower chair, bars in the bathroom, first floor access, etc) and stressed that I needed to maintain physical therapy at all costs. He was concerned about swallowing, which I have had some difficulty with, and told me that is the most common thing that could shorten life span, was aspiration pneumonia/choking. He felt that with my living alone, that falls and choking were two things I had to be concerned with. So I will pay extreme attention with this new information in mind.
I dread writing my family, and will be getting to that this week, I can think of a couple of key member, elders who might know who had what. Other than that, I have to focus on physical therapy.
I feel lost, and theres not much to do but get back to doing stuff, and be proactive. I would cry but there’s no tears (I had a 30 second cry in the restroom at the doctor’s office, but I had to just stifle it). I think I will start a painting to release some of this balled up emotion.
Okay, done venting. Thanks for listening to my rambling, whoever you are!