1. < Brain & Nervous System

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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Robin | @birdierobin | Feb 3, 2020
In reply to @lisalucier "Hi, @beth11 - like @hopeful33250, I really appreciate the update, especially about how the iron infusion..." + (show)
@lisalucier

Hi, @beth11 - like @hopeful33250, I really appreciate the update, especially about how the iron infusion has gone.

The times where I've had insomnia like you mentioned have been rough, and it's hard to feel good the next day.

I know that @aarniek has talked about spasticity, and may have some thoughts for you on management in terms of mobility and daily living. @jenniferhunter @jakedduck1 @beverlymarks @tdonoho also may have some thoughts.

Have you found anything that makes the constant muscle contracture in your feet and full body muscle spasms any better or worse? For example, are your symptoms better when you get better sleep or worse when you eat certain foods?

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I am so sorry for all your troubles hope you get to feeling better soon

REPLY
beth11 | @beth11 | Feb 3, 2020
In reply to @lisalucier "Hi, @beth11 - like @hopeful33250, I really appreciate the update, especially about how the iron infusion..." + (show)
@lisalucier

Hi, @beth11 - like @hopeful33250, I really appreciate the update, especially about how the iron infusion has gone.

The times where I've had insomnia like you mentioned have been rough, and it's hard to feel good the next day.

I know that @aarniek has talked about spasticity, and may have some thoughts for you on management in terms of mobility and daily living. @jenniferhunter @jakedduck1 @beverlymarks @tdonoho also may have some thoughts.

Have you found anything that makes the constant muscle contracture in your feet and full body muscle spasms any better or worse? For example, are your symptoms better when you get better sleep or worse when you eat certain foods?

Jump to this post

The spasticity seem to be progressively worsening. I'm having disrupted sleep because my symptoms wake me. Certainly lack of sleep doesn't help my mood. Nothing seems to help the spasms although baclofen takes the edge off.

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beth11 | @beth11 | Feb 3, 2020
In reply to @birdierobin "Do you have your lumbar MRI yet?" + (show)
@birdierobin

Do you have your lumbar MRI yet?

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I did. I have some bulging discs and an appointment with a surgeon in May. I had similar results with the cervical spine. The question is whether or not the impact of the discs is causing my symptoms. The previous surgeon did not think so.

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Robin | @birdierobin | Feb 4, 2020

I think a bulging disc is more of my problem than the Dr thinks. I have severy neuropathy pain after a minor accident in 2011. Never had it before. MRI Revealed ’ central protrusion. i have felt my arm getting weaker then I lost my balance. Mayo Clinic hopefully will get to the bottom of things. Good luck with yours!

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2 replies
beth11 | @beth11 | Feb 4, 2020
In reply to @birdierobin "I think a bulging disc is more of my problem than the Dr thinks. I have..." + (show)
@birdierobin

I think a bulging disc is more of my problem than the Dr thinks. I have severy neuropathy pain after a minor accident in 2011. Never had it before. MRI Revealed ’ central protrusion. i have felt my arm getting weaker then I lost my balance. Mayo Clinic hopefully will get to the bottom of things. Good luck with yours!

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Thanks @birdierobin! I'm hoping your appointment brings you answers & a successful treatment plan.

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beth11 | @beth11 | Feb 7, 2020
In reply to @hopeful33250 "Hello @beth11, I appreciate hearing from you and providing an update. I am sorry to hear..." + (show)
@hopeful33250

Hello @beth11,
I appreciate hearing from you and providing an update. I am sorry to hear that you have yet to find an answer or any relief from your symptoms. I hope that your appointment on Friday is helpful.
Will you post an update after that appointment?

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Hi Teresa & all. TGIF! I had an initial appointment with a hematologist today. He was very thorough in taking my medical history and in ordering initial bloodwork. He has also referred me to a gastroenterologist. His opinion regarding Cleveland clinic was that it should prove thorough and beneficial. My follow up appointment will be in 6 weeks and the gastroenterology appt. in a few weeks.

Have a great weekend everyone! Enjoying quite a snow storm in my neck of the woods!

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 7, 2020
In reply to @birdierobin "I think a bulging disc is more of my problem than the Dr thinks. I have..." + (show)
@birdierobin

I think a bulging disc is more of my problem than the Dr thinks. I have severy neuropathy pain after a minor accident in 2011. Never had it before. MRI Revealed ’ central protrusion. i have felt my arm getting weaker then I lost my balance. Mayo Clinic hopefully will get to the bottom of things. Good luck with yours!

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Hi, @birdierobin - if you've by chance not yet checked out the Mayo Clinic Connect Neuropathy group https://connect.mayoclinic.org/group/neuropathy/, you may find some interesting discussions there or start any new discussion you might want.

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1 reply
Robin | @birdierobin | Feb 8, 2020
In reply to @lisalucier "Hi, @birdierobin - if you've by chance not yet checked out the Mayo Clinic Connect Neuropathy..." + (show)
@lisalucier

Hi, @birdierobin - if you've by chance not yet checked out the Mayo Clinic Connect Neuropathy group https://connect.mayoclinic.org/group/neuropathy/, you may find some interesting discussions there or start any new discussion you might want.

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Thanks for the ‘tip’

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beth11 | @beth11 | Feb 10, 2020
In reply to @beth11 "Hi Teresa & all. TGIF! I had an initial appointment with a hematologist today. He was..." + (show)
@beth11

Hi Teresa & all. TGIF! I had an initial appointment with a hematologist today. He was very thorough in taking my medical history and in ordering initial bloodwork. He has also referred me to a gastroenterologist. His opinion regarding Cleveland clinic was that it should prove thorough and beneficial. My follow up appointment will be in 6 weeks and the gastroenterology appt. in a few weeks.

Have a great weekend everyone! Enjoying quite a snow storm in my neck of the woods!

Jump to this post

I received some initial results on my recent bloodwork, but I don't have all the results yet. My vitamin b12 level is low and so I will be taking a daily supplement. I've also tested positive for RA antibodies. I'm a bit discouraged to learn about further concerns but it can be adding to my symptoms and perhaps I'll feel less fatigued after a time.

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