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My husband saw a neurologist last week. (I did send an email in advance expressing some of my concerns.) My husband told the doctor everything was fine and he was forced into the appointment. He’s had a hard time admitting to changes, which I have seen for a few years now. Just recently we had a situation involving other family members and he had no explanation of his actions. He has an MRI scheduled so hopefully will know something soon.


My question is about involuntary movements. About six months ago he started moving his feet and toes constantly. He watches tv all day and night sitting in his recliner. There is continuous movement that I can’t mimic. It is an awkward, rhythmic movement, not just stretching his toes. I showed the doctor a video I took with my phone. When the doctor asked him about it my husband said he just like stretching his toes and he could stop if he wants to. He has started movements with his hands too and sometimes his whole body jerks. This does not usually happen when he is sleeping and immediately stops when he is napping. Just wondering if this is part of dementia or something else going on.

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The movements, if, tardive dyskinesia, could also be a side effect of some medications.
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I very much hope you get a good diagnosis after this workup. Is a neuro-psyc eval planned with a good neurologist? It sounds that it is time to get a really good overall evaluation. Now it is started is the time for follow it through so that you both have some answers.
While he is able to do this work and understand what he is doing, have you done POA, Will updates, End of Life discussions and paperwork for advanced directive. It is a good time for you BOTH to do this. One must be of competent mind and able to understand what is being done in order to do this work.
Sounds you will have a busy time now that diagnostic work is being done. I can't tell what these "movements" might be myself, anything from essential tremors to symptoms of some more critical problem, but I hope you will come back and update us as you go along. I sure do wish you the best, and am so relieved that your Hubby is cooperating with evaluation.
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Sounds like a neurological disease which should have been further explored by the neurologist. Movements like this are not a symptom of dementia, but that's not to say he doesn't have that also happening. Try to find a neurologist who is also a Movement Disorder Specialist. Take more videos to show the MDS. Has your husband started any new meds that could be causing side effects? Also, pay attention to his mental state. There may be more going on mentally eith him that you have overlooked because of the concern on the visible physical issues. Good luck.
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