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.

@sadnancy

About MS…I assumed it was ruled out although no one ever specifically said I don't have MS. I'll do some research and then question the doctor on my next visit. Thanks for your help.

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Nancy, while I'm not suggesting its MS, you may be able to cope with the sensation in ways that those who experience this particular symptom in MS do. It is referred to as the MS hug and is usually treated in the same way that spasticity is treated in other areas of the body, ie with muscle relaxants and gabapentin for nerve pain. See msfocusmagazine.org/Magazine/Magazine-Items/Give-Me-A-Hug,-But-Not-an-MS-Hug. It is found in other spinal/nerve conditions as well as MS.

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Happy New Year's everyone! I have been referred to a hematologist/oncologist for my anemia. Does anyone have any experience with diagnosis of iron anemia along with abnormal movement/muscle spasticity? It is complicating an already difficult diagnosis. I am hoping to have my iron infusion scheduled soon. There has been an almost 3 week delay from my insurance. Unfortunately, I have to constantly advocate for myself or simple things seem to fall through the cracks. Does this happen to others? What do you do? I am curious as to others experiences. It seems to be a widespread fact of life of the medical system in the US.

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@beth11

Happy New Year's everyone! I have been referred to a hematologist/oncologist for my anemia. Does anyone have any experience with diagnosis of iron anemia along with abnormal movement/muscle spasticity? It is complicating an already difficult diagnosis. I am hoping to have my iron infusion scheduled soon. There has been an almost 3 week delay from my insurance. Unfortunately, I have to constantly advocate for myself or simple things seem to fall through the cracks. Does this happen to others? What do you do? I am curious as to others experiences. It seems to be a widespread fact of life of the medical system in the US.

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Happy New Year Beth,I have not been to a hematologist. This is going to be my next. I am going through alot of different tests..I dont think I have exhausted all my Aves. I was told to go to Stanford in Calif. It all costs alot before I jump into something that I don't research. I don't want to close any door. I will keep you abreast if I find out that might help you also.. I hope you have a great New Year. God bless you

Liked by Lisa Lucier

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@sadnancy

Hi Beth, I'm sorry you are afflicted with a horrible ailment. The midsection spasms are familiar to me. My movement disorder specialist suspects I have abdominal dystonia. The spasms can last for hours. If I am standing up, the muscles tighten, pulling my upper body forward, crushing the ribs and I can't get my breath. It feels like a boa constrictor is squeezing me. I will begin a new med this week. Austedo is the name of it. If that doesn't relieve the spasms,Botox is the Plan B.You are the first person I've "met" who has this. Do my descriptions sound familiar to you? I'm a 73 yr old lady who also has PD. I live in South Carolina.

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Hi Nancy, I was checking to see how you are doing. Did you start the new medication? Any relief?

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@beth11

Hi Nancy, I was checking to see how you are doing. Did you start the new medication? Any relief?

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Nancy, What is the new medication you are on? What does it do? Look forward to hearing from you. Beverly

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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.

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@beth11

Nancy, while I'm not suggesting its MS, you may be able to cope with the sensation in ways that those who experience this particular symptom in MS do. It is referred to as the MS hug and is usually treated in the same way that spasticity is treated in other areas of the body, ie with muscle relaxants and gabapentin for nerve pain. See msfocusmagazine.org/Magazine/Magazine-Items/Give-Me-A-Hug,-But-Not-an-MS-Hug. It is found in other spinal/nerve conditions as well as MS.

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Thank you for the lead. The MS Hug description fits me to a tee.

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@sadnancy

Thank you for the lead. The MS Hug description fits me to a tee.

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@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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@beth11

@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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Good 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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@sadnancy

Good 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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How's the tolerance of "exercise" now, @sadnancy?

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@sadnancy

Good 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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Awesome! 😀

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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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@beth11

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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I 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.

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@lisalucier

How's the tolerance of "exercise" now, @sadnancy?

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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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@beth11

Awesome! 😀

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Update: Rib area spasms are less severe and less often.

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