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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

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

REPLY
@beth11

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

Jump to this post

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

REPLY
@heartbreaker

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

Jump to this post

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

REPLY
@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

Jump to this post

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/

REPLY
@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/

Jump to this post

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........

REPLY

Typos......thus the eye problem.......

REPLY
@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

Jump to this post

What is a dap scan

REPLY
@cathy514

What is a dap scan

Jump to this post

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

REPLY
Please sign in or register to post a reply.