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Has anyone been dx with Myoclonus? If so, what was the treatment?

Posted by mary05151989 @mary05151989, Jul 29, 2024

I have been diagnosed with myoclonus due to a rare side effect from an anxiety drug (hydroxozine). It has been a miserable 2 years. I can barely function from day to day and cannot work. I have taken Keppra and also have tried Briviact. I get some help but the side effects are terrible for me, making it a no-win situation. Can anyone relate or have advice? I am seeking help for a male in his mid 30s. Thanks

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 31, 2024

Hello @mary05151989 and welcome to Mayo Connect. I see that you would like to connect with others who also have myoclonus. On Connect, there are many discussions from members who have mentioned myoclonus. Here is a link that lists those discussions. I would encourage you to click on those links and read what others have posted.
--Myoclonus discussions on Connect
https://connect.mayoclinic.org/search/?search=myoclonus
If you would like more information on myoclonus, here is an article from Mayo Clinic's website that explains this disorder along with symptoms, diagnosis as well as treatments.
--Myoclonus
https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459
You said in your last sentence that you were asking for a man in his mid 30s. I'm wondering what specialists he has seen for this problem.

REPLY
lcb24 | @lcb24 | Apr 13 8:52pm

It seems to me that the diagnosis of myoclonus, is given when symptoms don’t fit “neatly” in to other more common neurological conditions. It is what my neurologist thinks I have, but is not sure. It has been one of 5 or 6 things she has tested me for. I have had multiple EMGs and full imaging of brain, nerves, spine, and blood vessels. Even a 96 hour, in home, video EEG study with cameras. I knew they would not see a seizure while I was confined to my house for four days. It only happens when I am walking or active. And while I have no seizure disorder based on that test, I am on keppra (which is an anti-seizure drug) for what starts as my right quad firing, weakness and the resulting, intermittent falling. Getting to a dosage of 2,000 mg a day has eliminated the falls, but having to deal with side effects like constipation suck. It is very frustrating when no one knows what you have. I had a second opinion at the Yale Mobility Clinic . But still no answers! And I’ve spent hours trying to research anything online that seems like what I have.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 14 8:53am
In reply to @lcb24 "It seems to me that the diagnosis of myoclonus, is given when symptoms don’t fit “neatly”..." + (show)
@lcb24

It seems to me that the diagnosis of myoclonus, is given when symptoms don’t fit “neatly” in to other more common neurological conditions. It is what my neurologist thinks I have, but is not sure. It has been one of 5 or 6 things she has tested me for. I have had multiple EMGs and full imaging of brain, nerves, spine, and blood vessels. Even a 96 hour, in home, video EEG study with cameras. I knew they would not see a seizure while I was confined to my house for four days. It only happens when I am walking or active. And while I have no seizure disorder based on that test, I am on keppra (which is an anti-seizure drug) for what starts as my right quad firing, weakness and the resulting, intermittent falling. Getting to a dosage of 2,000 mg a day has eliminated the falls, but having to deal with side effects like constipation suck. It is very frustrating when no one knows what you have. I had a second opinion at the Yale Mobility Clinic . But still no answers! And I’ve spent hours trying to research anything online that seems like what I have.

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Hello @lcb24 and welcome to Mayo Connect. It sounds like you have spent a lot of time trying to get a correct diagnosis for your problems. I understand that neurological problems can be frustrating for both the patient and physicians. Often, neurological problems do not fit into a neat diagnostic box. From your post, it sounds like the Keppra has helped eliminate the falling. Is my understanding correct?

You mention, "right quad firing, weakness and the resulting, intermittent falling." Could you explain this a bit more? I'm also wondering how many years have you been experiencing these neurological symptoms?

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