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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@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.

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My thyroid is fine. 🙂

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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

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@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.

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

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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.....

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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.

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Hi all, I hope you're staying as healthy and well as possible during this unprecedented time. I haven't updated in awhile and so thought I would share an update. I continue to work with my current neurologist to discover what may be causing my movement symptoms as well as foot spasticity. He had recommended a controlled increase of both baclofen and gabapentin to help relieve my symptoms. The pain and spams have continued to increase in my feet. I also have daily episodes that appear similar to partial seizures but are not epileptic seizures. He has recommended a brain mri(which are not being offered at this time) and further blood work to evaluate possible metabolic or autoimmune causes. I hope you all are doing well! Please share any thoughts and updates!
Beth11

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@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.

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@beth11 Would you mind sharing the name of the neuromuscular specialist you saw at Cleveland Clinic?

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@chiczebra

@beth11 Would you mind sharing the name of the neuromuscular specialist you saw at Cleveland Clinic?

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I know this is an old thread but I am wondering if there was any resolve. Did the neuromuscular specialist find anything to pin point? I have similar symptoms and have been in limbo for over three months. I’m looking for others who understand these symptoms.
Best of luck to you all,
Kat

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