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Neuromuscular Diseases Message Board
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Old 01-13-2010, 05:00 PM   #1
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rebeccawlaw HB User
Exclamation Symptoms controlling my Life- Please help!

I have symptoms that are seriously affecting my life and thus far no doctor has been able to accurately diagnose me.

I am a 31-year old female in Chicago. About a year and a half ago, I started falling down. I fell down the stairs, would fall while walking, or fall while just standing. About 3 weeks later, I started to have a foggy feeling, blurred vision, slurred speech, very broken up speech, very subtle opsoclonus (shaking eyes), myoclonus (shaking hands and feet), problems with coordination, drooping eyelids, constantly dropping things, a general feeling of malaise, and pain in my head and neck. A cervical MRI showed a large disc herniation compressing my spinal cord. My doctor said the disc could be causing the clumsiness and coordination problems, but not the other problems. He diagnosed me with kinsbourne syndrome, cervical disc syndrome, and migraines. I took Neurontin, which stopped the shaking in my eyes, hands and feet, but increased the brain fog. I was switched to Lyrica and the side effects were a little better but still pretty bad.

A CT scan showed an enlarged thymus and a small groundglass nodule in my lung. Since there were no nodules in my thymus, the neuro-oncologist told me to retest in 6 months. I went for another 8 months with these symptoms, visiting various doctors with no relief. Last March 31, I got an artificial disc put in my neck. After the surgery, I felt much better for about 8 months. I was on daily painkillers which I think may have suppressed the symptoms. This past December 4, I had another symptomatic episode. A friend found me wandering around the front of my house unable to figure out where the button was to close the garage. She took my hand to lead me inside, where I tripped and fell.

I am back on the Lyrica now, which supresses the shaking syndromes. During times when I am not symptomatic, I am almost normal- just a little tired. During times when I am symptomatic, I am almost completely disabled, particularly later in the day even when I have been able to work for a few hours in the morning.

I had another CT scan which found that my enlarged thymus had grown slightly. The nodule in my lung was still there but hadn't changed at all. My doctor has now diagnosed me with chronic silent migraines, but the diagnosis just doesn't feel right. He ordered the blood test for MG, which I will get done tomorrow.

I don't know if anyone out there has had similar symptoms and could recommend a direction in which I should go. Or maybe someone knows a great neurologist in Chicago. Right now I am desperate for answers.

Thanks,
Rebecca

 
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Old 03-09-2010, 09:14 AM   #2
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Location: janowice wielkie, dolny slask, poland
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zofia HB User
Re: Symptoms controlling my Life- Please help!

have you been tested for myastenia gravis?

 
Old 03-11-2010, 10:08 PM   #3
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kiragrace HB User
Re: Symptoms controlling my Life- Please help!

Have you ever had a sleep study done?

 
Old 03-11-2010, 10:10 PM   #4
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kiragrace HB User
Re: Symptoms controlling my Life- Please help!

have you ever had a sleep study done? an overnight study with a mslt (daytime)

 
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