1. < Brain & Nervous System

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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beverlymarks | @beverlymarks | Dec 29, 2019
In reply to @beth11 "Hi Beverly, I'm sorry to hear of the difficulties you have with your illness. My movement..." + (show)
@beth11

Hi Beverly, I'm sorry to hear of the difficulties you have with your illness. My movement neurologist has not suggested Botox at this point as his focus has been in diagnosing my condition. I know that it is something that is offered at the clinic. For now the treatment has been the muscle relaxant, baclofen.
Beth

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I am sorry to hear about your disability. Know Botox paralyzes the muscles. Are you finding Neurologist helpful? So far I am not impressed. Have you heard of Lorenzo's oil. This is what I have..Very sad. Just gets worse. I took my son to Kennedy Kreiger

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1 reply
beth11 | @beth11 | Dec 29, 2019
In reply to @beverlymarks "I am sorry to hear about your disability. Know Botox paralyzes the muscles. Are you finding..." + (show)
@beverlymarks

I am sorry to hear about your disability. Know Botox paralyzes the muscles. Are you finding Neurologist helpful? So far I am not impressed. Have you heard of Lorenzo's oil. This is what I have..Very sad. Just gets worse. I took my son to Kennedy Kreiger

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I respect what the neurologists offer in terms of their expertise, but there are limits to available knowledge and treatments and that can be very frustrating. My husband is a good advocate and we agree on the basics of what we expect in terms of care. Knowledge and patience are keys for me in order to stay positive and not give in to unhelpful thoughts such as all or nothing thinking, etc. Its not to say I'm never down but all things considered I continue to move forward and advocate for myself as much as possible. Its not always comfortable and challenges are there. Its part of the reason I'm here on this board. I'm looking for anyway forward. Even if the future is uncertain/unclear. I wish you comfort and healing.
Take care,
Beth

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beverlymarks | @beverlymarks | Dec 29, 2019
In reply to @lisalucier "Hi, @beth11 - welcome to Mayo Clinic Connect. That sounds difficult to spend a year and..." + (show)
@lisalucier

Hi, @beth11 - welcome to Mayo Clinic Connect. That sounds difficult to spend a year and a half trying to get an accurate diagnosis and some answers. I can imagine having your testing come back normal and gabapentin (Neurontin) and baclofen not making a difference must further increase your desire to get this figured out.

I'd like to introduce you to @hopeful33250 @susan62, as well as @jakedduck1 and @cathy514 to see if they have any thoughts related to your quest for a diagnosis for your movement disorder with a misdiagnosis of a seizure disorder along the way.

You talked about your toes curling in and crossing over each other. How is your mobiity?

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I have my feet jumping and no relief..I was.taking 900 mg of Neurontin and no relief. I was taken to the Emergency room I had a seizure was taken off Neurotin and Amprya. They will not let me drive. I was recommended to go to the Mayo clinic. At this point I want something more concrete. I have had 2 MRI's and not much difference.If anyone has similar problems please advise me.I am taking alot of supplements on my own. I feel like there is nothing to combat any issues.

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beverlymarks | @beverlymarks | Dec 29, 2019
In reply to @beth11 "Hi Lisa thanks! I am doing okay mobility wise, except that I am not driving. My..." + (show)
@beth11

Hi Lisa thanks! I am doing okay mobility wise, except that I am not driving. My toes are curled under and feet arched unless I'm standing upright with my full weight and so it is not safe to drive right now. I don't walk distances such as shopping at Walmart (my husband gets that duty now!). I have some leg weakness now from not being very active and hyper reflexes in my legs, but my arm reflexes were a bit improved from last time. I am starting to have more pain in my feet/joints from the abnormal postures. What is very difficult is the full body muscle spasms. It feels as though every muscle in my body is engaged/active at times and has lately been affecting my breathing i.e. I am unable to take a full breath when it affects my midsection. I refuse to give up and continue to look for effective treatment. My husband has been very supportive and although we have difficult days, he has continued to encourage and support me at all my appointments/tests/hospital stays. I will say that I have thought about what it may look like in the future if I need more help/support. It has opened my eyes to those who suffer from decreased independence as I am frustrated with my lack of independence.
Beth

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Beth,I have no help on my own. My son lives in Calif and wants me to move there. I dont want to burden him.But I will seriously consider it. I have fallen several times.I use a walker to get around.If there is anything I can recommend please feel free.

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sadnancy | @sadnancy | Dec 29, 2019
In reply to @beth11 "Hi Nancy, I'm sorry to hear of your difficulty with muscle spasms. It seems that the..." + (show)
@beth11

Hi Nancy, I'm sorry to hear of your difficulty with muscle spasms. It seems that the dystonia diagnosis is a somewhat catch-all diagnosis for otherwise unexplained muscle spasms. I am still hoping that the cause in my case can be determined although at this point the neurologist is running out of any further tests which is why he has suggested the Cleveland clinic. The spasms sometimes impact my entire body including my legs, arms. trunk, neck and jaw. These can last anywhere from a few minutes to an hour or more. I do get frightened when my breathing is impacted but it is usually brief. This is something that I will be discussing at my next appointment as a serious concern. I have heard of a similar description of the squeezing sensation from spasticity associated with MS. (my father has MS). Has MS been ruled out in your case?
I hope that the new medication brings you relief. Thank you for reaching out. 🙂
Beth

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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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1 reply
beth11 | @beth11 | Dec 29, 2019
In reply to @sadnancy "About MS...I assumed it was ruled out although no one ever specifically said I don't have..." + (show)
@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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beth11 | @beth11 | Dec 31, 2019

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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1 reply
beverlymarks | @beverlymarks | Dec 31, 2019
In reply to @beth11 "Happy New Year's everyone! I have been referred to a hematologist/oncologist for my anemia. Does anyone..." + (show)
@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

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beth11 | @beth11 | Jan 6, 2020
In reply to @sadnancy "Hi Beth, I'm sorry you are afflicted with a horrible ailment. The midsection spasms are familiar..." + (show)
@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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1 reply
beverlymarks | @beverlymarks | Jan 6, 2020
In reply to @beth11 "Hi Nancy, I was checking to see how you are doing. Did you start the new..." + (show)
@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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