undiagnosed movement disorder

Posted by beth11 @beth11, Dec 25, 2019

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.

Hi all, I hope you're staying as healthy and well as possible during this unprecedented time. I haven't updated in awhile and so thought I would share an update. I continue to work with my current neurologist to discover what may be causing my movement symptoms as well as foot spasticity. He had recommended a controlled increase of both baclofen and gabapentin to help relieve my symptoms. The pain and spams have continued to increase in my feet. I also have daily episodes that appear similar to partial seizures but are not epileptic seizures. He has recommended a brain mri(which are not being offered at this time) and further blood work to evaluate possible metabolic or autoimmune causes. I hope you all are doing well! Please share any thoughts and updates!
Beth11

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@beth11

I had an appointment at Cleveland Clinic with a neuromuscular specialist. It was surprisingly one of the worst experiences I have had with a physician. He was dismissive, condescending and uncompassionate to my suffering. I will continue to see my current neurologist but my muscle pain and weakness continues to worsen. I have an appointment with a spinal neurosurgeon in May. And my hematologist as referred me to a gastroenterologist. I currently have vitamin b12 and iron deficiency. My thoracic MRI showed some bulging discs but no spinal cord involvement. I'm not sure what the surgeon will say regarding the discs. My blood work also showed a positive RA factor.

I'm scheduled for my regular appt with the movement specialist in April. I'm hoping that he will agree to an MRI of the brain as its been two years to check for changes. I also want to be tested for lyme disease.

I'm very discouraged and wondering if I will be living with these symptoms for the rest of my life. It is very depressing.

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@beth11 Would you mind sharing the name of the neuromuscular specialist you saw at Cleveland Clinic?

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