Unsure where to go

Hi. I am a 33 year old female and have been having uncontrolleble body movements. It started about 2 years ago. I woke up one morning after many days of not sleeping well and a good amount of stress and couldn't open my left hand. I also had no control over my left wrist. It was limp. I was having left arm pain as well. I went to the ER and they were admitting me but I left because I was in Florida on vacation and wanted to wait until I got home to Louisiana. It was 3 days later when I finally got to the ER. At that time I was admitted and spent a week there. They thought I was having a stroke but all tests ruled it out. I spoke to a neurologist and was told to follow up with him. Two days later I found out I was pregnant and all tests stopped. 6 months after having the baby I started having twisting in my arms and legs. It progressively got worse until 3 weeks later my whole body was contorting  everyday and my eyes were moving from side to side rapidly. It caused me to vomit and teeth grinding and Extreme pain.y body was twisting from my face down to my feet.
I went to the neurologist and was told possible MS but after a brain MRI they said that was most likely not probable. These episodes have been happening more and more frequently.  I am now seeing a neurologist that specializes in movement disorders and she is saying it is PNKD. I do not know anything about this and have tried to research it but still don't understand. Is it a disease or can it be treated?
These are the finding of my MRI of cervical and brain.
Bulging disks at the C5 to C6 and more prominently at the C6/C7 levels     
with mild central canal stenosis at C6/C7.  No significant neural          
foramina stenosis.  Probable small annular tear at C5 / C6                 

Trace tonsillar ectopia with 1-2 mm of inferior extent of the cerebellar   
tonsils below the foramen magnum.                                          
Otherwise unremarkable motion limited MRI of the cervical spine            
specifically without evidence for cord signal normality to suggest edema   
or abnormal intrathecal enhancement.                                       

There is a nonspecific fluid signal lesion within the right thyroid gland  
measuring 6 to 7 mm.  Clinical correlation and further evaluation as       
warranted.
Impression: Subtle subcentimeter T2/flair signal hyperintensity in medial  
right temporal subcortical white matter without enhancement or diffusion   
signal abnormality.  This is nonspecific with differential considerations  
to include but not limited to unusual cortical dysplasia, sequela of       
prior trauma or inflammatory/infectious process with underlying            
nonenhancing mass lesion felt less likely although not excluded and        
follow-up recommended.  Correlation with EEG is recommended in light of    
history                                                                    

No evidence for acute infarction or enhancing lesion.                      
______________________________________                                                                           
This is the latest MRI of lumbar and thoracic
Technique: Multiplanar, multisequence MR images were performed of the lumbar spine obtained without contrast.

Comparison: Radiographs of the lumbar spine 6/28/12

Results:

The lumbar alignment demonstrates grade 1 retrolisthesis of L5 relative to S1. The vertebral body heights are well maintained, with no fracture. Note is made of bilateral pars defects at L5. No marrow signal abnormality suspicious for an infiltrative
process.

The conus is normal in appearance, and terminates at the L1 level. The adjacent soft tissue structures show no significant abnormalities.

There are findings of multi-level lumbar spondylosis, as below.

There is mild bilateral facet osteoarthropathy at L5-S1 and slight uncovering of the disc secondary to spondylolisthesis resulting in mild bilateral neural foraminal narrowing at this level.
Impression


Bilateral L5 pars defect, mild facet joint degenerative change, and mild anterolisthesis L5 over S1, contributing to mild bilateral neural foraminal narrowing. No significant central canal stenosis.

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Paroxysmal nonkinesigenic dyskinesia (PNKD) is a movement disorder characterized by daily to monthly attacks lasting anywhere from a few minutes to hours. The triggers are not action based but rather by alcohol, caffeine, fatigue, or even stress. The disorder has been shown to have a genetic basis. The difficulty with this disorder is the lack of response to typical medications such as the anticonvulsants (which are sometimes used for movement disorders and other neurological disorders). Other options may include a benzodiazepine, acetazolamide, or even a neuroleptic.

Regarding your brain MRI: There are multiple causes for so called plaques (or hyperintensities as you describe) in the brain. Most often, these are due to what is called "chronic small vessel disease", literally meaning diseased small vessels that supply blood flow to the brain. This is not an uncommon process in the brain and increases with age. This is not a disease in and of itself but rather is a reflection of unhealthy blood vessels, damaged by years of plaque build-up. This is most often due to a combination of several factors including the following: high blood pressure, diabetes, smoking, and high cholesterol. If these factors are well controlled, the damage to the brain can be stabilized and further damage prevented.

Other causes of plaques in the brain can be migraine. People with migraine often have plaques on their MRI that are of unclear cause or significance.

Other causes of plaques on MRI can usually be distinguished based on history and symptoms, such as symptoms of neurologic deficit (for example arm weakness or difficulty walking etc). These can also be distinguished based on the MRI appearance. These include, but are not limited to, multiple sclerosis, other demyelinating disease, and inflammatory processes such as vasculitis.

I would recommend that you continue following up with your movement disorder specialist. You do have a complicated presentation that does sound like it will require a specialist as you are doing.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[Sferry79]

I just wanted to add the day to day other problems.
Having trouble peeing and severe constipation

I am now having rashes. Also have two spots on my spine that are very sensitive.  The numbness in my right big toe, hand, arm and leg are getting worse.   

1. My fingers lock into place and i have to manually move them, neck, middle and lower back are constantly hurting, perfuse sweating, nervousness, feeling like I have low blood sugar but when tested its fine, shaking, short term memory problems, stuttering, concentration problems. 
2. I year ago when in hospital I couldn't open my hand, move my wrist, little to no reflexes, sweating, vomiting,  weak muscle control, no reaction to rubbing of sharp objects on legs, arms, feet, eyes moving rapidly with double vision, anxiety, short term memory problems, stuttering badly, concentration problems, hands and feet numb
3. Uncontrollable body movements, facial grimacing, vomiting,  hands and feet numb, eyes moving rapidly with double vision, anxiety, stuttering badly, short term memory problems, concentration problems, sweating.  All symptoms were made better when I took Valium. This lasted for about 3 weeks. It started out gradual then increased to everyday. It was not so bad in the morning but became very bad at night. When I ate it made everything worse and caused me to throw up.   
I am now on 2 10mg of Valium, 3 20mg of Baclofen and 3 mg of Klonopin a day.   

[Sferry79]

I am sorry if I am putting in too much info. I just desperately want help.
The uncontrollable body movements have become and everyday thing. It is ruining my life. I am in constant pain, getting depressed and my daughter is scared to come around me because I look so odd. I hope this doesn't overload you but I thought by getting it all out at once it may make a difference.
Thank you very much.

[Sferry79]

A related discussion, Thank you was started.