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White Matter Disease

Brain & Nervous System | Last Active: Sep 7 6:22am | Replies (95)

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I was diagnosed after going to an ENT after an exam for hearing aids. The ENT sent me for an MRI of my head. He gave me no reason. According to the MRI I have severe white matter disease. The ENT told me not to worry about it. Lots of older people have it. I looked it up and I am worried. None of my doctors, including my internist and psychiatrist had anything much to say about it. My psych did say that it would likely kill me. He hasn’t brought it up again since that appointment. I have always neen one who trips and falls. I seem to change directions too quickly. I had migraines throughout my life including ocular migraines. They were severe and weekly throughout menopause and quit after it was over. I have had a few ocular migraines since, but no headaches. I get dizzy occasionally, but have never passed out. I was diagnosed with ADHD at 64 and take Adderall once a day. I will be 80 in April. I’m unsure how to react to this. Am I terminally sick? Will I have a stroke at anytime? Why will win’t my doctors address this with me? Otherwise I am healthy and active. Do I have a future?

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Replies to "I was diagnosed after going to an ENT after an exam for hearing aids. The ENT..."

White matter disease (chronic microvascular disease) can be quite scary. I can be fine and then get very "wobbly" (my wife's word for it!) and have trouble standing. Your comment about changing directions quickly also hits home. I believe that you are referring to ataxia. I can be walking and suddenly veer off course. I sometimes have to grab onto something to prevent falling, although I have gone down pretty hard a few times. I was diagnosed in 2018 and am now 69. I feel fortunate that there has been no cognitive decline, just major gait and balance issues (and tinnitus). Also, be aware that having white matter disease means that you could be prone to lacanar strokes. I've had a few show up om my MRI's.

It is getting worse. Sometimes I think people think I'm drunk when I haven't even had a drink (occasional slurred speech also, but not lately). It is starting to impact my social life because I afraid that I will embarrass my wife when we are in a social setting.

Good Luck! There's nothing we can do about it. My neurologist said that they can't rotoroot my brain!