Anja
Registered: 08/12/09
Posts: 2
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| #1 |
My family history looks like CADASIL ran on my paternal grandfather's side, but my father died (with all the symptoms) just before CADASIL was discovered. I always knew that I took after Dad and his sister. I had migraines when I was younger. Then, in my early forties, I started having little dizzy spells, and strange problems with memory and disorientation.
When I first learned about CADASIL, I asked my doctor to have me tested for it. He had never heard of it, but he sent me for an MRI, which showed I had a pattern of lacunar strokes. My cholesterol was normal, and my blood pressure was very low (a symptom of the disease in our family). Then the doctor put me on a massive dose of statin, plus aspirin and B-vitamins. He told me not to take NSAIDS, even though I need them for arthritis.
That was two years ago, and he still won't give me a referal for the DNA test. I brought him articles about CADASIL, but I don't think he read them. He said if I have something like that, I'm better off not knowing about it, and a positive test would make it hard for me to get employment or insurance. He said not to tell my boss about the strokes, or I'll be fired.
I'm still about three years away from being able to afford to retire. My father and his sister were both forced to retire younger that me because of mental confusion, but the economy was different then.
I'm very independent at work, but people have started asking me if I'm taking medications that affect my mind, and why I work so slowly, and why I'm always late (I can get lost on the way to work). I don't know what to tell them.
I thought if I could have the DNA test, I would have something to tell my boss if I get into too much trouble, and if I need to apply for disability. My doctor said, "Don't even consider disability. It's not that easy. Just keep working until you're 65!" If I follow his advice, I feel like I'm being dishonest with my employer, and setting myself up for some major humiliation in the near future.
Is this doctor right, or should I find a doctor who will have me tested?
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Donnapal
Registered: 09/09/09
Posts: 1
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| #2 |
I am interested in this question also, I recently found out my 3 cousins (paternal side) and Paternal Uncle,possibly another Uncle have all been diagnosed. I am not sure if I should get tested or not. How much would a diagnoses change my life? what would I do different than I am doing now? I have some of the symptoms although no migrain headaches, I have had 2 eye migrains, vertigo once, depression, but is it enough of the symptoms? My father passed away from cancer, but did suffer from depression, and vertigo, he has 2 brothers and a sister, one brother still alive has been diagnosed, his other brother is believed to have had it (diagnosed ms) not sure about his sister. out of the 2 brothers that have or possibly have/had it 3 children have tested positive..I am tossing this around myself
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Anja
Registered: 08/12/09
Posts: 2
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| #3 |
I've been falling down a couple of times a month, and slurring my speech, and my hands have become very weak. I finally convinced my doctor that my symptoms are bad enough I should be tested (I wish he hadn't waited so long). I'm going to get a blood test sent to Athena Diagnostics. Does anyone know how long it takes to get the results?
Anja
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