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.

@birdierobin

Yes Lisa that is the scan

Jump to this post

Interesting reading that about the DAT Scan though, it’s not a definitive diagnosis for Parkinson!

REPLY
@cathy514

Maybe never was offered by u of m

Jump to this post

I had the pet scan

Liked by Lisa Lucier

REPLY
@cathy514

I had the pet scan

Jump to this post

What did your doctors learn from your PET scan, @cathy514?

REPLY

Hi @barbbie,
I merged your discussion about dysautonomia or autonomic dysfunction to this ongoing conversation, so that you could reconnect with the members participating in this discussion. Simply click VIEW & REPLY in your email notification to find your post.

REPLY

I have suffered with peculiar movements for years now. I have been to Boston and New York City and the National Institute of Health only hearing you have a Psychogenic movement disorder. I knew that wasn’t so because it was triggered by touch usually around my right shoulder, trapezius muscle area. It started after my second concussion and was just in my right shoulder, arm, and hand. After my third concussion, it went body wide. The contractures are painful and last a long time rendering me incapable of moving. I went to an appt with Core Therapy where PTs use manual therapy. When my body started very quick jerking I asked what he thought it was. He told me my nerves were hyperactive. A short while later while working on my neck and right shoulder area everything stiffened in position, my right hand in a claw position. The contractures went down my whole right side. Again I asked for an explanation. He said my nerves were super sensitive. He felt they could be calmed but it will be along, slow process. I looked up info – http://www.keystonensc.com/downloads/epa-nerve-hypersensitivity-syndromes.pdf and after reading that I went to -https://naturalsolutionsforahealthyyou.com/using-diet-to-balance-the-sympathetic-and-parasympathetic-nervous-systems-part-2-of-3/
Here’s a good explanation if you have been told like me you have dysautonomia or autonomic dysfunction – https://www.linkedin.com/pulse/symptoms-overactive-sympathetic-nervous-system-you-headed-chad-oler/
Reading all this has made me hopeful that with their help at Core Therapy I will make some forward progress no matter how slow.

REPLY

@barbbie Glad to hear you advocated for yourselve and did your own research. Smart lady

REPLY
@lisalucier

What did your doctors learn from your PET scan, @cathy514?

Jump to this post

I had an appointment at Cleveland Clinic with a neuromuscular specialist. It was surprisingly one of the worst experiences I have had with a physician. He was dismissive, condescending and uncompassionate to my suffering. I will continue to see my current neurologist but my muscle pain and weakness continues to worsen. I have an appointment with a spinal neurosurgeon in May. And my hematologist as referred me to a gastroenterologist. I currently have vitamin b12 and iron deficiency. My thoracic MRI showed some bulging discs but no spinal cord involvement. I'm not sure what the surgeon will say regarding the discs. My blood work also showed a positive RA factor.

I'm scheduled for my regular appt with the movement specialist in April. I'm hoping that he will agree to an MRI of the brain as its been two years to check for changes. I also want to be tested for lyme disease.

I'm very discouraged and wondering if I will be living with these symptoms for the rest of my life. It is very depressing.

Liked by swift

REPLY
@beth11

I had an appointment at Cleveland Clinic with a neuromuscular specialist. It was surprisingly one of the worst experiences I have had with a physician. He was dismissive, condescending and uncompassionate to my suffering. I will continue to see my current neurologist but my muscle pain and weakness continues to worsen. I have an appointment with a spinal neurosurgeon in May. And my hematologist as referred me to a gastroenterologist. I currently have vitamin b12 and iron deficiency. My thoracic MRI showed some bulging discs but no spinal cord involvement. I'm not sure what the surgeon will say regarding the discs. My blood work also showed a positive RA factor.

I'm scheduled for my regular appt with the movement specialist in April. I'm hoping that he will agree to an MRI of the brain as its been two years to check for changes. I also want to be tested for lyme disease.

I'm very discouraged and wondering if I will be living with these symptoms for the rest of my life. It is very depressing.

Jump to this post

Iron Deficiency? Have they found out why? I had anemia but I had bleeding internally from AVM's. Also has your thyroid been checked? I know this answer is of no help but I'm kind of going through the same thing and am waiting to get a EMG. Had a brain MRI, Cervical Spine MRI and an EEG done. Balance issues, weakness issues pain in joints issues plus depression/anxiety.

REPLY
@dablues

Iron Deficiency? Have they found out why? I had anemia but I had bleeding internally from AVM's. Also has your thyroid been checked? I know this answer is of no help but I'm kind of going through the same thing and am waiting to get a EMG. Had a brain MRI, Cervical Spine MRI and an EEG done. Balance issues, weakness issues pain in joints issues plus depression/anxiety.

Jump to this post

Not yet. I assume the gastroenterologist will do some investigating. Vitamin B12 deficiency can cause demyelination similar to MS plus muscle weakness and fatigue.

REPLY
@beth11

Not yet. I assume the gastroenterologist will do some investigating. Vitamin B12 deficiency can cause demyelination similar to MS plus muscle weakness and fatigue.

Jump to this post

My thyroid is fine. 🙂

Liked by swift

REPLY

Hi dear precious Beth that's good news; have you had thought to checking your immune system blood tests can show if you are short of minerals and Cooper iron and zine it's easier to change your food add A,B, C and especially vitamin k without the right vitamins , etc you will feel poorly , even though you might only need little Cooper and zinc without them other vitamins won't work so well for your health , and you can become very unwell. Good news hope you able to feel better real soon turmeric ginger root dandelion root all make good healthy teas too or ADD to smoothie, curry, soup etc. …. Enjoy your precious weekend kind regards swift . HUG from chilly old England . Keep smiling !!! positive mind always beneficial. All your symptoms could be fibrous virus infection especially in autoimmune diseases . Please let us know how things go with gyno

Liked by lioness, beth11

REPLY
@dablues

Iron Deficiency? Have they found out why? I had anemia but I had bleeding internally from AVM's. Also has your thyroid been checked? I know this answer is of no help but I'm kind of going through the same thing and am waiting to get a EMG. Had a brain MRI, Cervical Spine MRI and an EEG done. Balance issues, weakness issues pain in joints issues plus depression/anxiety.

Jump to this post

Have you been tested for autoimmune disorders? Like rheumatoid arthritis?

Liked by swift

REPLY

Hi dear precious @beth11 and co it's not just iron your low on whether it's autoimmune diseases or something only a woman's suffering from alot to do with nervous system working right , it can be down to what you are choosing to eat and drink , sodas especially coke cola can rid you from all goodness your eating, so take them out your diet / lifestyle changes especially if you want to feel better, ginger isn't just a thing to stop you feeling sick it's so much more than that, turmeric isn't just to add spice to curry YES it takes time especially when you suffering might be hard for you. But it's got to be worth trying not just only once and saying that doesn't work for me , because it takes time. Changes you make even little steps add up when you stop believing you can't help yourself, you need to see doctor , the doctor isn't a miracle man / women they only know how to treat Your symptoms or when you broken your arm or leg, then yes you need the doctor pawpaw, ginger root dandelion root cilantro lemon s , oranges, &. many more, eat fruit daily an Apple will really keep the doctor away, try pears, berries make you strength return but you need to stop processed foods especially sugars that rises your your blood sugar levels : gives you diabetics , not life everlasting ,when you eat process food , try cooking with coconut oil your see difference almost right away. Your see your mind thinking clearer, Try it even if you don't like the taste at the start change little things at a time. Like stop sugar there's honey natural sweet things dates if you eat just three a day that would give you more energy efficient in ways you might only dream of right now.
Tea without sugar and no milk, it's made that way add lemon not boiling water wait for boiled kettle to cool a little don't drink straight away let it stew and even make some more for later on in the day,
keep it in jar in your fridge or just with lid on on your side in kitchen.
The longer you keep it the more beneficial it is for you even add to smoothies , enjoy your precious day knowing happy heart is from above.
Kind regards swift .
hug from chilly winter snows in late winter.Keep smiling…..

Liked by lioness

REPLY

Hi all, thought members in this discussion might like to know that Mayo Clinic Connect has opened up a brand new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to help members connect and cope during these unprecedented times.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also welcome to start a new discussion on any COVID-19-related topic you'd like to discuss.

REPLY
Please login or register to post a reply.