undiagnosed movement disorder
I am new to this discussion forum. I have been seeking a diagnosis for over a year and a half and am open to any and all suggestions. I was hospitalized in 2018 and misdiagnosed with a seizure disorder. After year of failing to improve or confirm seizures via eeg and video eeg I was referred to a movement neurologist. I have abnormal muscle movements which impact my entire body, muscle spasticity in both feet which has become constant, and myoclonus mostly at rest. My toes are completely curled in and cross over each other. All tests have come back normal including brain MRI/CT, EMG, and upper spinal MRI. I am scheduled for a lumbar MRI which if it comes back normal my neurologist has suggested I seek treatment at either the Cleveland clinic or Mayo clinic. If anyone has similar experiences please share any advice. I am taking baclofen and neurontin without any improvement. I can no longer drive and am not working.
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Michael Fox got Parkinson's very early. Maybe he has a foundation or a web site?
Haha Beth! I had cancer at age 50 m, got over/thru all that, now this, I don’t think we are as healthy as our grandparents used to be God definitely has Different plans for us, for all mankind
He does! Call the Michael J Fox foundation go figure!
Hi, @birdierobin - when you have a moment, you might want to check out the Connect Parkinson's group, if you've not already https://connect.mayoclinic.org/group/parkinsons-disease/
I have thank you. And since Mayo will be a second opinion I’m eatnot sure that’s my problem . Since the others are a death sentence ......... it would be a lesser evil........
Typos......thus the eye problem.......
What is a dap scan
Hi, @cathy514 - is this the scan you are thinking of? https://www.parkinson.org/blog/whats-hot/update-DAT-scanning
Cathy a DAP (maybe DAT) is a special Brain scan that determines the dopamine in your brain
Yes Lisa that is the scan