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 | Jan 22, 2020
In reply to @aarniek "I think we do suffer some similar symptoms and the one that no one else ever..." + (show)
@aarniek

I think we do suffer some similar symptoms and the one that no one else ever had is the total loss of long term memory! Mine came on after I had been in protracted withdrawal for 4 years ,so strange and it’s devastated me as not only does it take away my past,it tells me something happened to cause it and my neurologist is a waste of time as he has no answers plus he did 2 MRI’s ! Any info you can provide could help greatly. Head pressure and muscle tension of shoulder and back plus tinnitus round out my issues. Thanks for getting back to me and hope we can help each other!

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Oh n, I too have lost a lot of pieces of the past. Even when the person telling me goes into grave detail - nothing! Its very sad, to say the least!

I got my Mayo appt for March 24th

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Robin | @birdierobin | Jan 22, 2020
In reply to @barbbie "Wow! Your symptoms come closest to mine as I have ever read. In a span of..." + (show)
@barbbie

Wow! Your symptoms come closest to mine as I have ever read. In a span of 7 years I had 3 concussions with the last leaving me without a memory of falling, knocked out for about 5 minutes, postconcussion headaches, followed by a body wide increase in muscle contractions that started after my 2nd concussion, and then essential myoclonus. This has been going on since 1999. I take klonopin for the myoclonus. My muscles are tight but when I have an episode, generally started by someone touching or injecting around my right shoulder area, contortion is a good word for a description of the visual. Just had a bout at pain management that lasted over an hour. Time is all that helps resolve it as I am allergic to so many meds. I have been told they are all in my head and I am anxious. I deny either, well I 'm pretty sure the head injuries are responsible but that's not what they mean when they say all in my head. I find both myoclonus and sustained contractures exhausting and moderately painful compared to my other pain issues.

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I too am allergic to many meds. Don
I've only had one mild concussion in my life. Never thought of it but it was months before this started!

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Robin | @birdierobin | Jan 22, 2020
In reply to @barbbie "Wow! Your symptoms come closest to mine as I have ever read. In a span of..." + (show)
@barbbie

Wow! Your symptoms come closest to mine as I have ever read. In a span of 7 years I had 3 concussions with the last leaving me without a memory of falling, knocked out for about 5 minutes, postconcussion headaches, followed by a body wide increase in muscle contractions that started after my 2nd concussion, and then essential myoclonus. This has been going on since 1999. I take klonopin for the myoclonus. My muscles are tight but when I have an episode, generally started by someone touching or injecting around my right shoulder area, contortion is a good word for a description of the visual. Just had a bout at pain management that lasted over an hour. Time is all that helps resolve it as I am allergic to so many meds. I have been told they are all in my head and I am anxious. I deny either, well I 'm pretty sure the head injuries are responsible but that's not what they mean when they say all in my head. I find both myoclonus and sustained contractures exhausting and moderately painful compared to my other pain issues.

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Ps I’m sorry for your pain. So far I don’t have any

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Robin | @birdierobin | Jan 22, 2020
In reply to @birdierobin "I understand your frustration a lot. Hang in there! Its a long journey......" + (show)
@birdierobin

I understand your frustration a lot. Hang in there! Its a long journey......

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Thank you, yes it is long!

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Robin | @birdierobin | Jan 22, 2020
In reply to @beth11 "Hi @birdierobin I'm currently waiting for word from Cleveland clinic regarding an appointment with a neuromuscular..." + (show)
@beth11

Hi @birdierobin I'm currently waiting for word from Cleveland clinic regarding an appointment with a neuromuscular specialist. My current dr. has been diligent but unable to pinpoint a cause for my symptoms. And the baclofen only helps marginally regarding the muscle spasticity. I'm beginning to have pain in my feet and ankles due to the contraction of my toes and arching feet. Are you on medications for Parkinson's?

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I got my appt at Mayo! Its March 24th

They want me on meds but I don’t like the side effects and I’m not gonna take them without a second opinion because the other things that they think I have one responder the medicine so I may be taking it for nothing so I’m not taking anything currently and I won’t until I get a second opinion!

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Robin | @birdierobin | Jan 22, 2020
In reply to @ajp2019 "Normal Pressure Hydrocephalus | Patricia's Story Johns Hopkins Medicine After 18 frustrating months of going undiagnosed..." + (show)
@ajp2019

Normal Pressure Hydrocephalus | Patricia's Story
Johns Hopkins Medicine
After 18 frustrating months of going undiagnosed for balance and memory problems and bladder issues, Delaware resident Patricia finally learned she had normal pressure hydrocephalus from neurologist Abhay Moghekar from the Johns Hopkins Cerebral Fluid Center.
Hear about her new appreciation for life following her shunt surgery and rehabilitation.
Visit us: http://www.hopkinsmedicine.org/neurology

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Awh the link doesn’t work!

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beth11 | @beth11 | Feb 3, 2020

Hi everyone, currently unable to sleep well so I thought I'd post an update. I have finished my iron infusion and unfortunately have not noticed any difference in my muscle symptoms and general fatigue. I have an appointment this Friday with a hematologist. I have an upcoming appointment at Cleveland with a neuromuscular specialist. We have much to discuss as my symptoms have become much more severe. I'm experiencing constant muscle contracture in my feet, and full body muscle spasms that prevent me from standing/ walking. Muscle weakness and fatigue from the spasticity is worse. Does anyone have symptoms of spasticity? How do you manage in terms of mobility and daily living?

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 3, 2020
In reply to @beth11 "Hi everyone, currently unable to sleep well so I thought I'd post an update. I have..." + (show)
@beth11

Hi everyone, currently unable to sleep well so I thought I'd post an update. I have finished my iron infusion and unfortunately have not noticed any difference in my muscle symptoms and general fatigue. I have an appointment this Friday with a hematologist. I have an upcoming appointment at Cleveland with a neuromuscular specialist. We have much to discuss as my symptoms have become much more severe. I'm experiencing constant muscle contracture in my feet, and full body muscle spasms that prevent me from standing/ walking. Muscle weakness and fatigue from the spasticity is worse. Does anyone have symptoms of spasticity? How do you manage in terms of mobility and daily living?

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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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2 replies
beth11 | @beth11 | Feb 3, 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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Thanks Teresa. I will update after my upcoming appointments. It's certainly an uphill battle right now.

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Lisa Lucier | @lisalucier | Feb 3, 2020
In reply to @beth11 "Hi everyone, currently unable to sleep well so I thought I'd post an update. I have..." + (show)
@beth11

Hi everyone, currently unable to sleep well so I thought I'd post an update. I have finished my iron infusion and unfortunately have not noticed any difference in my muscle symptoms and general fatigue. I have an appointment this Friday with a hematologist. I have an upcoming appointment at Cleveland with a neuromuscular specialist. We have much to discuss as my symptoms have become much more severe. I'm experiencing constant muscle contracture in my feet, and full body muscle spasms that prevent me from standing/ walking. Muscle weakness and fatigue from the spasticity is worse. Does anyone have symptoms of spasticity? How do you manage in terms of mobility and daily living?

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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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