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undiagnosed movement disorder
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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I have been on the new medicine for a week. The good news is that I haven't noticed any side effects. However, I haven't noticed any beneficial changes. I seem to be less tolerant of "exercise" - standing up for 2-3 minutes. It takes 10 or more minutes of sitting down for my breathing to slow down to normal. The name of the medicine is Austedo. I was taking 6 mg twice a day. Tomorrow I'll begin 9 mg twice a day. I'm using Boost meal replacement drinks more often because if I make a sandwich or heat something in the microwave, I'm out of breath before the food is ready.
Thank you for the lead. The MS Hug description fits me to a tee.
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1 Reaction@sadnancy Maybe your symptoms are not something your physician sees typically with Parkinson's? I hope you get some relief. I know from experience the anxiety that the 'hug' causes. I try to stay calm and concentrate on slowing my breath. Thank you for posting an update. I'm hoping for the best regarding the new medication. Take Care, Beth
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3 ReactionsGood news! Today was the second day of NO rib cage area spasms. I think the new med is starting to take effect. I call it my miracle pill.
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4 ReactionsHow's the tolerance of "exercise" now, @sadnancy?
Awesome! 😀
I received my first intravenous iron today and will have a second dose in a week. My spinal MRI showed some narrowing so I've been referred for a surgical consult. My neurologist has also referred me for an appt. with a neuromuscular specialist at Cleveland Clinic so I'm waiting to hear back regarding the appt. My hematologist appt. Is in early February.
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3 ReactionsI have problems with Spasticity in my legs. I cannot walk without a walker. I have fallen many times. My Dr has me on Hydrocortisone 15 mg 2×a day. I have not heard of . My Dr didn't recommend Iron IV. Is this helping you? I pray that it continues for you. What did they diagnose you with? Stay strong. God Bless.
I don't think there has been any improvement in exercise tolerance. I stand less and sit more. Still get out of breath walking in my small house. That would be the distance of about 4 car lengths. I watched a You Tube video last week: QiGong for Parkinson's.My participation consisted of observing and thinking whether or not I could/would do the movements.
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1 ReactionUpdate: Rib area spasms are less severe and less often.