@bill54321 Hi Bill, I developed Exaggerated Sleep Myoclonus 10 years ago, as a reaction to a drug called Reglan. My jerks are mainly when falling asleep and waking, feeling like electric shocks. They happen in all my extremities and body-even my diaphragm/belly. I do have mild ones here and there while awake. I have been on Depakote and Klonopin, but in the last couple of years with very good control. I also realized many of my triggers were caffeine, stress, and lack of sleep. I know we can't get rid of these things in our life (I still like my coffee 🙂 ), but it helps to prepare you to know when you might have flare-ups. I was able to wean off of Depakote, and taper my Klonopin down to 3/4 of the dose and doing well. Jerks are still there but not any worse. I can honestly say I have gotten used to them, and I don't allow them to bother me anymore, and go on with life. Also, there are 8 different types of Myoclonus, you can find on National Institute of Neurological Disorders. But a neurologist is best suited to decide which one you have. Hang in there Bill! It will be ok! --Prayers for you.
Could you post here or private message me the 8 different types of Myoclonus. I have no problems with sleep. Jerks are 2 feet high just before falling asleep or when drowsy during the day after a meal when leaning back to read or watch T.V. First I was told I had Restless legs. Then I found Period leg motion syndrome. Now I realize I have Myoclonus Syndrome. I am a retired Physical Theraipst and know too much. Thoughts on medication
Could you post here or private message me the 8 different types of Myoclonus. I have no problems with sleep. Jerks are 2 feet high just before falling asleep or when drowsy during the day after a meal when leaning back to read or watch T.V. First I was told I had Restless legs. Then I found Period leg motion syndrome. Now I realize I have Myoclonus Syndrome. I am a retired Physical Theraipst and know too much. Thoughts on medication
Hi @bill54321, you'll notice that I removed your email address from your post. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message function. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other. If @lizaa posts about the different types of myoclonus here in this discussion, we all learn.
Types of myoclonus can be categorized as .
- Physiological myoclonus
- Essential myoclonus
- Epileptic myoclonus
- Symptomatic (secondary) myoclonus
@bill54321 Hi Bill, I developed Exaggerated Sleep Myoclonus 10 years ago, as a reaction to a drug called Reglan. My jerks are mainly when falling asleep and waking, feeling like electric shocks. They happen in all my extremities and body-even my diaphragm/belly. I do have mild ones here and there while awake. I have been on Depakote and Klonopin, but in the last couple of years with very good control. I also realized many of my triggers were caffeine, stress, and lack of sleep. I know we can't get rid of these things in our life (I still like my coffee 🙂 ), but it helps to prepare you to know when you might have flare-ups. I was able to wean off of Depakote, and taper my Klonopin down to 3/4 of the dose and doing well. Jerks are still there but not any worse. I can honestly say I have gotten used to them, and I don't allow them to bother me anymore, and go on with life. Also, there are 8 different types of Myoclonus, you can find on National Institute of Neurological Disorders. But a neurologist is best suited to decide which one you have. Hang in there Bill! It will be ok! --Prayers for you.
This is reply # 2 A cat has a twitch....myoclonic jerlk has an anatomy In the motor cortex, 1 single motor nerve and it's branches fire(4S area). I believe that NO ONE has discribed this. Let me, as a Physical Therapist of 40 yrs active practice enlighten you.and any neurologist listening. Read "Bobath Cerebral Palsy" The book, 1953" discribes spinal reflexes and how to inhibit them.For example, The head position on a "tonic Neck Reflex" when rotated right cause the arm on the right to extend and the one on the left to flex. The reverse is true if the head is turned left. If the head is mid-line and flexed both arms flex. If the mid-line head extends, both arms extend. A similar thing happens in the "Cross Extensor Reflex to the legs and also to the feet. Nerves cross over to the othe rside (dissication of the cord)in the neck As the motor nerve descends, it crosses synapes chemically at various levels. These synapses are also intervened by sensory nerves crossing across at various levels from a connection across the spinal cord. So your 4S single motor units from the motor cortex may (Recruit) other reflexes and become a sysnergist action by the time it reaches the feet. Why does it affect the feet???Is it because the feet are further away, This would suggest a vascular component. Also a endoconogy asdpect. You can sleep better idf you rub tour lower kegs with Magnesium Jell..(Note citric not nitric(Magnesium citric is next to the alcohol section at Smith and is 99c a bottle. Don't get hooked on the expensive stuff. So, they say Myoconus is caused by nerve damage, tumor, or reaction to drugs and a few others. Let us take a look. The endocrine system has not fully been explained. A lack of a certain enzyme in the hypothalmus may be contributong to all of these movement disorders. Who at Mayo has been talkingi about them.? Calcium is common but if too much paralzes you, like it did me. Stopped those calcium shot for Osteopenia in a hurry. But also, lack of calcium can lead to harmone problems causing restless leg motions,etc. Now It should be noted that the brain vacular system has a barrier different from general transfer of osmatic chemicals across membranes. If the brain get too much pf a chemical and is overloaded in that respect, it affect motor movements and parkinsons. What does Mayo clinic say about this. Do we lay people have to do all the researching. All I hear is "Parrot" Well., the book says this crap. Area I need answers on. 1)Brain Barrtier and chemicals involved causing exascerbation of movement disorders, 2) Endroconlogist answer To thyroid, Thymus and organ related chemical that effect the brain barrier and brain related motion problem of parkinsins, ataxia, mid-brain etc, 3) better understanding of imagery locally or at mayo you ascertain pressure from ? or tumors in the cord and brain 4) I have had neck and back surgery, have stenosis, need a walker to go past 10 feet. How would you diagnose nerve damage contributing to movement disorders. 5). I have C 6,7 numbness pattern that is shutting my ability to use my right arm down. I regained motor movement, but the problem is numb shoulders, musclutaneuos and thumb pattern that is turn more into pain, Can't do surgery, so what???
I do hope some one from Mayo is looking at this. I Live in Taos New Mexico. What does Arizona, Mayo have to offer???......
i
This is reply # 2 A cat has a twitch....myoclonic jerlk has an anatomy In the motor cortex, 1 single motor nerve and it's branches fire(4S area). I believe that NO ONE has discribed this. Let me, as a Physical Therapist of 40 yrs active practice enlighten you.and any neurologist listening. Read "Bobath Cerebral Palsy" The book, 1953" discribes spinal reflexes and how to inhibit them.For example, The head position on a "tonic Neck Reflex" when rotated right cause the arm on the right to extend and the one on the left to flex. The reverse is true if the head is turned left. If the head is mid-line and flexed both arms flex. If the mid-line head extends, both arms extend. A similar thing happens in the "Cross Extensor Reflex to the legs and also to the feet. Nerves cross over to the othe rside (dissication of the cord)in the neck As the motor nerve descends, it crosses synapes chemically at various levels. These synapses are also intervened by sensory nerves crossing across at various levels from a connection across the spinal cord. So your 4S single motor units from the motor cortex may (Recruit) other reflexes and become a sysnergist action by the time it reaches the feet. Why does it affect the feet???Is it because the feet are further away, This would suggest a vascular component. Also a endoconogy asdpect. You can sleep better idf you rub tour lower kegs with Magnesium Jell..(Note citric not nitric(Magnesium citric is next to the alcohol section at Smith and is 99c a bottle. Don't get hooked on the expensive stuff. So, they say Myoconus is caused by nerve damage, tumor, or reaction to drugs and a few others. Let us take a look. The endocrine system has not fully been explained. A lack of a certain enzyme in the hypothalmus may be contributong to all of these movement disorders. Who at Mayo has been talkingi about them.? Calcium is common but if too much paralzes you, like it did me. Stopped those calcium shot for Osteopenia in a hurry. But also, lack of calcium can lead to harmone problems causing restless leg motions,etc. Now It should be noted that the brain vacular system has a barrier different from general transfer of osmatic chemicals across membranes. If the brain get too much pf a chemical and is overloaded in that respect, it affect motor movements and parkinsons. What does Mayo clinic say about this. Do we lay people have to do all the researching. All I hear is "Parrot" Well., the book says this crap. Area I need answers on. 1)Brain Barrtier and chemicals involved causing exascerbation of movement disorders, 2) Endroconlogist answer To thyroid, Thymus and organ related chemical that effect the brain barrier and brain related motion problem of parkinsins, ataxia, mid-brain etc, 3) better understanding of imagery locally or at mayo you ascertain pressure from ? or tumors in the cord and brain 4) I have had neck and back surgery, have stenosis, need a walker to go past 10 feet. How would you diagnose nerve damage contributing to movement disorders. 5). I have C 6,7 numbness pattern that is shutting my ability to use my right arm down. I regained motor movement, but the problem is numb shoulders, musclutaneuos and thumb pattern that is turn more into pain, Can't do surgery, so what???
I do hope some one from Mayo is looking at this. I Live in Taos New Mexico. What does Arizona, Mayo have to offer???......
i
Hi, @bill54321 - Mayo Clinic Connect is a patient to patient support community, so rather than expert input, what you will find here is "lived experience" from other patients.
If you'd like to consult with Mayo Clinic in Arizona about your condition, you may go to this appointment page http://mayocl.in/1mtmR63 and arrange a medical consult by phone or online.
You said surgery can't be done in your situation. I'm supposing you mean for your right arm? Have the doctors you've seen thus far ruled that option out, then?
@bill54321 Bill I am sorry you are dealing with so much. At the same time, you and I are both in the medical field. I am a nurse of 26 years. I realize that medicine has not come anywhere near being perfected, and millions of conditions are still a mystery to doctors. I know that can be frustrating as a patient, but we do have to remember that doctors and research don't know everything. But this is a condition that, though limited, has medications that may help, and even some cases even Deep Brain Stimulation Surgery can help.
Thank you for all of the detailed information. I've had PLMD and RLS since I was about 14. I can handle the RLS it's the PLMD that I am constantly fighting. The twitching during the day but mostly at night. The acking and pain in them is unbearable sometimes. I've been on every medication possible until my body doesn't respond to it. I finally did an EEG which came up fine and sleep study. The sleep study came up that I have severe PLMD and RLS and to take 1200 MG of Gabapentin and 600 MG of Mirapex. I work in finance and theres on way I could function that. My doctor never went over my my sleep study he just said over the phone what I told you. I'm wondering how severe is it? What do the PLMD arousal number mean. Will this keep getting worse? I have to take mirapex throughout the day because insurance doesn't like to cover time release. When I was on different insurance they covered Nuepro patches. Those worked so well. My doctor at the time referred me to Seattle doctors after 6 months of seeing him. No one in Seattle specialist in PLMD. Are there other people out there going through what I am? Are there different medications that help better so I don't have off time. Any help would be appreciated. Thank you
Not sure about PLMD but I have a real battle with RLS. I'll be good for 8-10 days then it will keep me up all night. After going sleepless for about 38 hours RLS symptoms hard to control for next 2 days. Only thing that has ever given me any relief is methedone. I also use the nuepro but not sure it does anything. Biggest draw back with Meth is getting it is a major pain in the ass. Very few Dr will take Rx over for specialist. In my case that means traveling 4 hrs Rd trip to specialist once per month to pick up written Rx. Drs will not mail and my eye sight won't allow me to drive so it creates a real issue. Gava p did zero... Good luck but look into meth it may give you some relief.
Hello @krissyelkins07, I would like to add my welcome to Connect along with @kanaazpereira. I would also echo Kanaaz's question and ask have you discussed the periodic limb movement disorder with your doctor or sleep therapist? From what I have read about it, PLMD is associated with sleeping. Here are a few references I found.
my small computer cut me off on along thank you. So, again, you are more than kind, you are a rare considerate human being. I am 90 years old. Thank you
@ @krissyelkins07
I haven't read this entire thread but I didn't think people with PLMD knew the movements were occurring.
You mentioned ”The twitching during the day.” I didn't think PLMD happened during the day. What makes you think it's the PLMD and not the RLS you feel during the day? Did you have a sleep study? Are you sure that you’re not suffering from some type of Myoclonus?
Have you had this diagnosis verified by a specialist. I hope my post isn't redundant because like I said I haven’t read the entire thread.
Best of luck to you,
Jake
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@bill54321 Hi Bill, I developed Exaggerated Sleep Myoclonus 10 years ago, as a reaction to a drug called Reglan. My jerks are mainly when falling asleep and waking, feeling like electric shocks. They happen in all my extremities and body-even my diaphragm/belly. I do have mild ones here and there while awake. I have been on Depakote and Klonopin, but in the last couple of years with very good control. I also realized many of my triggers were caffeine, stress, and lack of sleep. I know we can't get rid of these things in our life (I still like my coffee 🙂 ), but it helps to prepare you to know when you might have flare-ups. I was able to wean off of Depakote, and taper my Klonopin down to 3/4 of the dose and doing well. Jerks are still there but not any worse. I can honestly say I have gotten used to them, and I don't allow them to bother me anymore, and go on with life. Also, there are 8 different types of Myoclonus, you can find on National Institute of Neurological Disorders. But a neurologist is best suited to decide which one you have. Hang in there Bill! It will be ok! --Prayers for you.
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2 ReactionsCould you post here or private message me the 8 different types of Myoclonus. I have no problems with sleep. Jerks are 2 feet high just before falling asleep or when drowsy during the day after a meal when leaning back to read or watch T.V. First I was told I had Restless legs. Then I found Period leg motion syndrome. Now I realize I have Myoclonus Syndrome. I am a retired Physical Theraipst and know too much. Thoughts on medication
Hi @bill54321, you'll notice that I removed your email address from your post. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message function. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other. If @lizaa posts about the different types of myoclonus here in this discussion, we all learn.
Types of myoclonus can be categorized as .
- Physiological myoclonus
- Essential myoclonus
- Epileptic myoclonus
- Symptomatic (secondary) myoclonus
See details of each of these categories in these 2 articles.
https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459
https://rarediseases.org/rare-diseases/general-myoclonus/
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3 ReactionsThis is reply # 2 A cat has a twitch....myoclonic jerlk has an anatomy In the motor cortex, 1 single motor nerve and it's branches fire(4S area). I believe that NO ONE has discribed this. Let me, as a Physical Therapist of 40 yrs active practice enlighten you.and any neurologist listening. Read "Bobath Cerebral Palsy" The book, 1953" discribes spinal reflexes and how to inhibit them.For example, The head position on a "tonic Neck Reflex" when rotated right cause the arm on the right to extend and the one on the left to flex. The reverse is true if the head is turned left. If the head is mid-line and flexed both arms flex. If the mid-line head extends, both arms extend. A similar thing happens in the "Cross Extensor Reflex to the legs and also to the feet. Nerves cross over to the othe rside (dissication of the cord)in the neck As the motor nerve descends, it crosses synapes chemically at various levels. These synapses are also intervened by sensory nerves crossing across at various levels from a connection across the spinal cord. So your 4S single motor units from the motor cortex may (Recruit) other reflexes and become a sysnergist action by the time it reaches the feet. Why does it affect the feet???Is it because the feet are further away, This would suggest a vascular component. Also a endoconogy asdpect. You can sleep better idf you rub tour lower kegs with Magnesium Jell..(Note citric not nitric(Magnesium citric is next to the alcohol section at Smith and is 99c a bottle. Don't get hooked on the expensive stuff. So, they say Myoconus is caused by nerve damage, tumor, or reaction to drugs and a few others. Let us take a look. The endocrine system has not fully been explained. A lack of a certain enzyme in the hypothalmus may be contributong to all of these movement disorders. Who at Mayo has been talkingi about them.? Calcium is common but if too much paralzes you, like it did me. Stopped those calcium shot for Osteopenia in a hurry. But also, lack of calcium can lead to harmone problems causing restless leg motions,etc. Now It should be noted that the brain vacular system has a barrier different from general transfer of osmatic chemicals across membranes. If the brain get too much pf a chemical and is overloaded in that respect, it affect motor movements and parkinsons. What does Mayo clinic say about this. Do we lay people have to do all the researching. All I hear is "Parrot" Well., the book says this crap. Area I need answers on. 1)Brain Barrtier and chemicals involved causing exascerbation of movement disorders, 2) Endroconlogist answer To thyroid, Thymus and organ related chemical that effect the brain barrier and brain related motion problem of parkinsins, ataxia, mid-brain etc, 3) better understanding of imagery locally or at mayo you ascertain pressure from ? or tumors in the cord and brain 4) I have had neck and back surgery, have stenosis, need a walker to go past 10 feet. How would you diagnose nerve damage contributing to movement disorders. 5). I have C 6,7 numbness pattern that is shutting my ability to use my right arm down. I regained motor movement, but the problem is numb shoulders, musclutaneuos and thumb pattern that is turn more into pain, Can't do surgery, so what???
I do hope some one from Mayo is looking at this. I Live in Taos New Mexico. What does Arizona, Mayo have to offer???......
i
-
Like -
Helpful -
Hug
2 ReactionsHi, @bill54321 - Mayo Clinic Connect is a patient to patient support community, so rather than expert input, what you will find here is "lived experience" from other patients.
If you'd like to consult with Mayo Clinic in Arizona about your condition, you may go to this appointment page http://mayocl.in/1mtmR63 and arrange a medical consult by phone or online.
You said surgery can't be done in your situation. I'm supposing you mean for your right arm? Have the doctors you've seen thus far ruled that option out, then?
-
Like -
Helpful -
Hug
3 Reactions@bill54321 Bill I am sorry you are dealing with so much. At the same time, you and I are both in the medical field. I am a nurse of 26 years. I realize that medicine has not come anywhere near being perfected, and millions of conditions are still a mystery to doctors. I know that can be frustrating as a patient, but we do have to remember that doctors and research don't know everything. But this is a condition that, though limited, has medications that may help, and even some cases even Deep Brain Stimulation Surgery can help.
Thank you Colleen, for the link to the subgroups of Myoclonus. There are more types than I read of in the NIH . Very interesting.
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1 ReactionNot sure about PLMD but I have a real battle with RLS. I'll be good for 8-10 days then it will keep me up all night. After going sleepless for about 38 hours RLS symptoms hard to control for next 2 days. Only thing that has ever given me any relief is methedone. I also use the nuepro but not sure it does anything. Biggest draw back with Meth is getting it is a major pain in the ass. Very few Dr will take Rx over for specialist. In my case that means traveling 4 hrs Rd trip to specialist once per month to pick up written Rx. Drs will not mail and my eye sight won't allow me to drive so it creates a real issue. Gava p did zero... Good luck but look into meth it may give you some relief.
my small computer cut me off on along thank you. So, again, you are more than kind, you are a rare considerate human being. I am 90 years old. Thank you
-
Like -
Helpful -
Hug
1 Reaction@ @krissyelkins07
I haven't read this entire thread but I didn't think people with PLMD knew the movements were occurring.
You mentioned ”The twitching during the day.” I didn't think PLMD happened during the day. What makes you think it's the PLMD and not the RLS you feel during the day? Did you have a sleep study? Are you sure that you’re not suffering from some type of Myoclonus?
Have you had this diagnosis verified by a specialist. I hope my post isn't redundant because like I said I haven’t read the entire thread.
Best of luck to you,
Jake