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.

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Dear Beth , glad you have some news, how about trying coconut oil add dandelion root to get toxins out from your precious body , mind set think positive helps , we all struggling for illness just like bible says critical times hard to deal with and diseases everywhere . He will wipe out your tears and pain will be no more in just a little while longer... Psalms 37:4,9-11 Rev 21:3-5 HUG from England . Kind regards swift. Praying for you all

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@swift

Dear Beth , glad you have some news, how about trying coconut oil add dandelion root to get toxins out from your precious body , mind set think positive helps , we all struggling for illness just like bible says critical times hard to deal with and diseases everywhere . He will wipe out your tears and pain will be no more in just a little while longer... Psalms 37:4,9-11 Rev 21:3-5 HUG from England . Kind regards swift. Praying for you all

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Thanks for the scripture to read. God bless

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Sorry to hear this problem. My husband had a movement disorder -- he was falling a lot, and did not swing his arms as he walked. There were no tremors. Turns out he had Parkinson's -- missed by 2 neurologists. Keep trying.

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Heartbreaker, does your husband have the trimmers as well because I do not but I don’t swim arm, my left one

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He had occasionally a very fine, almost imperceptible tremor. I am not sure why you're not swinging your left arm. After a while he had trouble keeping his balance. He was always very athletic and strong. This all started happening when he was about 76. You look pretty young!

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@heartbreaker

He had occasionally a very fine, almost imperceptible tremor. I am not sure why you're not swinging your left arm. After a while he had trouble keeping his balance. He was always very athletic and strong. This all started happening when he was about 76. You look pretty young!

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They did a DAP scan on me, but had no experience with it, & showed?a lack of dopamine in the right side of my brain. They are saying Parkinson, no tremor. I have zero balance at all. I am 63. I do however have a lot of other signs of Parkinson, as well as MSA & PSP

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@heartbreaker

Sorry to hear this problem. My husband had a movement disorder -- he was falling a lot, and did not swing his arms as he walked. There were no tremors. Turns out he had Parkinson's -- missed by 2 neurologists. Keep trying.

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I have heard from drs. that movement disorders can be very difficult to diagnose. They are not even sure that my disorder is a movement disorder. We will see what happens on Friday. I am 47...I have a lot of living that I want to do yet. I continue to search for answers.

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@beth11

I have heard from drs. that movement disorders can be very difficult to diagnose. They are not even sure that my disorder is a movement disorder. We will see what happens on Friday. I am 47...I have a lot of living that I want to do yet. I continue to search for answers.

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I’m sorry Beth, I know the frustration all too well!!!

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@beth11

I have heard from drs. that movement disorders can be very difficult to diagnose. They are not even sure that my disorder is a movement disorder. We will see what happens on Friday. I am 47...I have a lot of living that I want to do yet. I continue to search for answers.

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Ps and 47 is way way too young!

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@birdierobin

Ps and 47 is way way too young!

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I at least wanted to make it to 50 before my body went to hell. 🥴😏

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