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.

@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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Michael Fox got Parkinson's very early. Maybe he has a foundation or a web site?

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@beth11

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

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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

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@heartbreaker

Michael Fox got Parkinson's very early. Maybe he has a foundation or a web site?

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He does! Call the Michael J Fox foundation go figure!

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@birdierobin

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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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/

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@lisalucier

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/

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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……..

Liked by Lisa Lucier

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Typos……thus the eye problem…….

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@birdierobin

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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What is a dap scan

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@cathy514

What is a dap scan

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Hi, @cathy514 – is this the scan you are thinking of? https://www.parkinson.org/blog/whats-hot/update-DAT-scanning

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@cathy514

What is a dap scan

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Cathy a DAP (maybe DAT) is a special Brain scan that determines the dopamine in your brain

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