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.

I should also add that I have had copper, b12, iron blood tests and I am anemic. I will be getting an iron infusion in the next week or two. I had a vitamin d deficiency which has improved with supplements.

Liked by Leonard

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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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Good afternoon, @beth11 and @llsalucier. I have two of the myoclonus symptoms: "sleep starts" and toes that curl and cross over each other. There is no pain or discomfort.

The toes seem to just happen when I have done a bit too much walking or stretching. I sometimes have to reach down and "unlock" them.

"Sleep starts" happen to me almost every night. Some of these body jerks seem to be dependent on how my bed position places my neck and head. Once I get the pillow just right and my head and neck in the right angles, they stop.

I do have a question. You indicated that the Neurontin was not helping. Did you mean not helping with your pain or not helping with the "sleep starts"? When do you take the Neurontin and at what dosage? I take 1200 mg an hour before bedtime. I don't know if that medication helps with the movement issues. It does help with the small fiber neuropathy pain and allows me to sleep better.

And before I forget….welcome….to Connect. You are in good hands. May you be content and at ease. Chris

Liked by Leonard, lindy208

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@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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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

Liked by Leonard, swift

REPLY
@artscaping

Good afternoon, @beth11 and @llsalucier. I have two of the myoclonus symptoms: "sleep starts" and toes that curl and cross over each other. There is no pain or discomfort.

The toes seem to just happen when I have done a bit too much walking or stretching. I sometimes have to reach down and "unlock" them.

"Sleep starts" happen to me almost every night. Some of these body jerks seem to be dependent on how my bed position places my neck and head. Once I get the pillow just right and my head and neck in the right angles, they stop.

I do have a question. You indicated that the Neurontin was not helping. Did you mean not helping with your pain or not helping with the "sleep starts"? When do you take the Neurontin and at what dosage? I take 1200 mg an hour before bedtime. I don't know if that medication helps with the movement issues. It does help with the small fiber neuropathy pain and allows me to sleep better.

And before I forget….welcome….to Connect. You are in good hands. May you be content and at ease. Chris

Jump to this post

Hi Chris, I began the neurontin as a treatment for restless legs type symptoms at night, however the symptoms have become much more severe. It is a low dose, and it does help to calm the twitching a bit. My recent EMG results have ruled out any neuropathy which is good. thank you for the welcome!
Beth

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@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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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.

Liked by Leonard

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My disease is called xlinked adrenaleukodystrophy and it is genetic. My brother died 65 yrs ago.they knew nothing.My son died at 40.My mother had it was in a wheelchair she just passed away in April.she was 94.My sister is 59 and she is in a wheelchair and had a colostomy. Not able to control her bowels. My son is 45 he also has it .But he has ED.and has bowel issues .I have a niece she is a carrier.My neurologist put me on a drug called Amprya it helped me walk but I had seizures. And it goes on. I only wished there was a cure. Is there any cure for you? I walk with a Walker. I pray I won't be in a wheelchair. I hope I can continue talking to you and hopefully meet you.I live in Naples Fl at this present time.

Liked by Leonard, iceblue, swift

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What can Botox do for your disorder? What Doctors have you been to see? No Dr in Florida has any knowledge of my disease. I would even agree to Bone Marrow transplant,they only do it on males,because they get the brain part.I have no idea what is next .

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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'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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@beverlymarks

What can Botox do for your disorder? What Doctors have you been to see? No Dr in Florida has any knowledge of my disease. I would even agree to Bone Marrow transplant,they only do it on males,because they get the brain part.I have no idea what is next .

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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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@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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@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

REPLY
@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?

Jump to this post

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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@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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@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

Jump to this post

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.

Liked by Lisa Lucier, beth11

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