Hello @bill54321, welcome to Connect. It must be difficult trying to deal with these symptoms and not find any answers. There is an older discussion on Connect where @daisy3, @ctandy1271 and @mhall2eat have discussed Myoclonus - https://connect.mayoclinic.org/discussion/myoclonus/. Hopefully the members may be able to share some suggestions with you if they are still on Connect. I did find some other information that may be helpful to you.
If I forgot, I wish to thank you for your input. I had not heard of Myoconus Syndrome until your referral. I have been operating under the illusion I had RL problem. I use Gapadentin and Roperole . They are parkinson and seizure medications. I see my primary care physcian
tomorrow. I need to check more on causes. 7 brothers and sisters and my daughter all died of cancer. I have modified.my diet to become a health nut. But at 90 yrs. old, I have outlived their averages. Still, a brain tumor, spinal lesion, and brain barrier problem are things I can be tested for. Thank you again. You were a big 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
Look at Myoclonus Dystonia disorder. Like me, you may need another diagnosis. Suggtest EEG and an MRI. Zone in on brian tumor and slow release of magnesium from the brain barrier. You and I have something exotic that Docs in the know have to bone up on. Some don,t have the time. I see mine in a week. I will post back. We don't dream about twitches we have lighting bolts all day long when we get drowsy. So what do we do? Keep looking and asking questions. Maybe some one will believe us and not try to treat us with you have an urge to move at night crap.
I do agree with Bill that some doctors think patients make up their symptoms or are overexaggerating. I suggest a sleep study if a doctor feels this is nothing or not really happening. And find a good doctor if one is telling you that you are in it just for meds or overreacting. There are good doctors out there who are willing to help.
I do agree with Bill that some doctors think patients make up their symptoms or are overexaggerating. I suggest a sleep study if a doctor feels this is nothing or not really happening. And find a good doctor if one is telling you that you are in it just for meds or overreacting. There are good doctors out there who are willing to help.
Or make a video any time I ear, lay back and become drowsy. Kicking from lightening bolts every 40 secs up to over 1 foot in the air hurt and it is during the day as well as the night. It ia called Periodic restless leg movement during awakeness.(PLMA) In the morning it is more like RLS. In the after noon , it is more like PRLS T.his may be a wake up diagnosis call for a lot of you.
Not made up. Dr Scalcini, head of internal med was one of docs I saw regularly for year at Mayo -R. She prescribed 25 mg slow release Iron and 500mg of Vitamin C and it stopped my ER trips in the middle of night for IV Ativan, No more restless legs.
Here’s what I found –
Periodic limb movement disorder (PLMD) is characterized by twitching, flexing, and jerking movements of the legs and arms during sleep. The movements occur every 20 to 40 seconds and may last for minutes or hours throughout the night. People with PLMD don’t know their limbs are moving, and are unable to control or stop them. https://emedicine.medscape.com/article/1188558-overview
Researchers don’t know the exact cause of this disorder. Some think it may be related to low iron levels or a problem with the nerves in the limbs caused by another condition. It’s important to note that PLMD is not the same as restless legs syndrome (RLS). The majority of patients with RLS have PLMD, but the reverse is not true.
Here’s what I found –
Periodic limb movement disorder (PLMD) is characterized by twitching, flexing, and jerking movements of the legs and arms during sleep. The movements occur every 20 to 40 seconds and may last for minutes or hours throughout the night. People with PLMD don’t know their limbs are moving, and are unable to control or stop them. https://emedicine.medscape.com/article/1188558-overview
Researchers don’t know the exact cause of this disorder. Some think it may be related to low iron levels or a problem with the nerves in the limbs caused by another condition. It’s important to note that PLMD is not the same as restless legs syndrome (RLS). The majority of patients with RLS have PLMD, but the reverse is not true.
My symptoms started with physical lighting bolt myoclonic jerks. Mainly starting with pre-sleep levels. I had been hospitalized for a bowel blockage. aAter relief, the myoclonic jerks started in the hospital. I also developed weakness. The stay in the hospital was extended and I qualified for Skilled nursing at Taos Living Center. The hospital called my leg jerks Restless leg syndrome as does the Academy for sleep disorders.The DIAGNOSIS DOES NOT FIT. Periodic leg Movement and Restless leg syndrome by the book take place during sleep. I was given a .5 mg Ropinole that helped. I also found the weaakness in the hospital and Skilled Nursing was from too much Calcium---hypercalcimia. To help the nerves heal, I was given gabpintine 300 mg capsules( PLEASE BE AWARE FOLKS_MANY DOCTORS DO NOT KNOW THERE ARE THREE MAKERS OF GABIPENTIN)I Had Neuruo Gabpintine for nerve repair and anti-seizure. This works well with me in combintion with LOW doses od .5md ropinole.. Horizon Gabipintin makes 600 mg pills.( It is not ususal to hear of 2400mg being used for restless leg syndrome or periodic leg movement disorder) Another maker is more for Shingles. I menttion this because my Myoclonic Jerks happen any time I experience pre or post sleep. This correlates with the periods after noon and evening meals. I have had to take .5 mg ropinole 1 hour before meals to head off the painful jerk.(Remember, for lack of a better term, they referr to this as Restless leg syndrome. Some Italians did a day time study and determined Restless leg syndrome takes place more in the morning and Periodic leg movement more in the after noon.(I am the only one saying it is pre and post sleep initiated.) My early morning post sleep jerls are soft and weak. So, I get up, wake up more by walking them off and go back to sleep ar 5:00 PM in the Morning. My Brain scan showed normal for a 90 years old man But, no tumors. My endocornologist only deals with parathyroid, so I am starting on Vitamin D suppliments and testing in 6 weeks. So. who does Ferrin Prrscriptions?The neurosurgeon, neurologist, and endoconologist all refused. So, I was told to wait until my 6 week lab test before going back to my primary Care Physician to ask for the Ferrin Test. Does this all seem to familiar to you all? Meanwhile I am on potassium suppliment and stopped the Reclasp injections for Osterpenia. My physical Therapy has gotten me back to square one. But I need a walker because of L-5,S-1 Stenosis, etc. I got off the high doses of pain pills for my back and C5,6 neuropathy I take Tramodol 50 mg 2 times a day. All my medications are kept at the minimum levels and I deal with my remaining pain and sleep with Open Focus Visualization (Google Les Fehmi Ph. D.Princeton U. or Navy Seals sleep method). I avoid increases ,since It leads to Augmenttion. When all is said and done, please listen and seek the best in medical Physicians. Do not add or subtract medications yourself.But, you must be PRO-ACTIVE for yoursleves. Do NOT BE SATIFIED WITH OLD 10 years old diagosis of your condition, when your know you do not fit the mold. Google and Google some more.Your stories do have an impact.
My symptoms started with physical lighting bolt myoclonic jerks. Mainly starting with pre-sleep levels. I had been hospitalized for a bowel blockage. aAter relief, the myoclonic jerks started in the hospital. I also developed weakness. The stay in the hospital was extended and I qualified for Skilled nursing at Taos Living Center. The hospital called my leg jerks Restless leg syndrome as does the Academy for sleep disorders.The DIAGNOSIS DOES NOT FIT. Periodic leg Movement and Restless leg syndrome by the book take place during sleep. I was given a .5 mg Ropinole that helped. I also found the weaakness in the hospital and Skilled Nursing was from too much Calcium---hypercalcimia. To help the nerves heal, I was given gabpintine 300 mg capsules( PLEASE BE AWARE FOLKS_MANY DOCTORS DO NOT KNOW THERE ARE THREE MAKERS OF GABIPENTIN)I Had Neuruo Gabpintine for nerve repair and anti-seizure. This works well with me in combintion with LOW doses od .5md ropinole.. Horizon Gabipintin makes 600 mg pills.( It is not ususal to hear of 2400mg being used for restless leg syndrome or periodic leg movement disorder) Another maker is more for Shingles. I menttion this because my Myoclonic Jerks happen any time I experience pre or post sleep. This correlates with the periods after noon and evening meals. I have had to take .5 mg ropinole 1 hour before meals to head off the painful jerk.(Remember, for lack of a better term, they referr to this as Restless leg syndrome. Some Italians did a day time study and determined Restless leg syndrome takes place more in the morning and Periodic leg movement more in the after noon.(I am the only one saying it is pre and post sleep initiated.) My early morning post sleep jerls are soft and weak. So, I get up, wake up more by walking them off and go back to sleep ar 5:00 PM in the Morning. My Brain scan showed normal for a 90 years old man But, no tumors. My endocornologist only deals with parathyroid, so I am starting on Vitamin D suppliments and testing in 6 weeks. So. who does Ferrin Prrscriptions?The neurosurgeon, neurologist, and endoconologist all refused. So, I was told to wait until my 6 week lab test before going back to my primary Care Physician to ask for the Ferrin Test. Does this all seem to familiar to you all? Meanwhile I am on potassium suppliment and stopped the Reclasp injections for Osterpenia. My physical Therapy has gotten me back to square one. But I need a walker because of L-5,S-1 Stenosis, etc. I got off the high doses of pain pills for my back and C5,6 neuropathy I take Tramodol 50 mg 2 times a day. All my medications are kept at the minimum levels and I deal with my remaining pain and sleep with Open Focus Visualization (Google Les Fehmi Ph. D.Princeton U. or Navy Seals sleep method). I avoid increases ,since It leads to Augmenttion. When all is said and done, please listen and seek the best in medical Physicians. Do not add or subtract medications yourself.But, you must be PRO-ACTIVE for yoursleves. Do NOT BE SATIFIED WITH OLD 10 years old diagosis of your condition, when your know you do not fit the mold. Google and Google some more.Your stories do have an impact.
@bill54321 -Bill, hearing your full story intrigued me. When you were in the hospital for a bowel blockage, were you given any medications like Reglan, Compazine, Phenergan? These are all drugs, as you may know, that can cause tardive dyskinesia, or other permanent movement disorders. As is what happened in my case. Reglan was the cause of my Myoclonic jerks. It started within a couple of days of stopping Reglan. My gastro refused to say it was related. I ended up in the ER because the ability to sleep was gone due to the "shocks and violent jerks" every time I would begin to fall asleep. Immediately when I told them what medicine I had just stopped, the ER doctor told me Reglan was the cause, and it was probably permanent. He was right.
I am new to this site, so In hope I am doing this right. My PLM started when I was in my early 40's, I am 73 now. A couple of years later RLS started and I have been on Mirapex since then. The only thing different that has helped are painkillers, I found this out when I had surgery. I could not work and stay on painkillers so I have been taking Mirapex forever and I have to be careful with it. If I take it to late at night and I be extremely sleepy the next morning. That is not a problem unless I have to drive somewhere. The odd thing about all of this is when I am a passenger in the car my RSL & PLM will start and I will have to take a mirapex, but when I am driving I don't have RLS or PLM.
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If I forgot, I wish to thank you for your input. I had not heard of Myoconus Syndrome until your referral. I have been operating under the illusion I had RL problem. I use Gapadentin and Roperole . They are parkinson and seizure medications. I see my primary care physcian
tomorrow. I need to check more on causes. 7 brothers and sisters and my daughter all died of cancer. I have modified.my diet to become a health nut. But at 90 yrs. old, I have outlived their averages. Still, a brain tumor, spinal lesion, and brain barrier problem are things I can be tested for. Thank you again. You were a big help.
-
Like -
Helpful -
Hug
1 ReactionLook at Myoclonus Dystonia disorder. Like me, you may need another diagnosis. Suggtest EEG and an MRI. Zone in on brian tumor and slow release of magnesium from the brain barrier. You and I have something exotic that Docs in the know have to bone up on. Some don,t have the time. I see mine in a week. I will post back. We don't dream about twitches we have lighting bolts all day long when we get drowsy. So what do we do? Keep looking and asking questions. Maybe some one will believe us and not try to treat us with you have an urge to move at night crap.
I do agree with Bill that some doctors think patients make up their symptoms or are overexaggerating. I suggest a sleep study if a doctor feels this is nothing or not really happening. And find a good doctor if one is telling you that you are in it just for meds or overreacting. There are good doctors out there who are willing to help.
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Like -
Helpful -
Hug
2 ReactionsOr make a video any time I ear, lay back and become drowsy. Kicking from lightening bolts every 40 secs up to over 1 foot in the air hurt and it is during the day as well as the night. It ia called Periodic restless leg movement during awakeness.(PLMA) In the morning it is more like RLS. In the after noon , it is more like PRLS T.his may be a wake up diagnosis call for a lot of you.
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Like -
Helpful -
Hug
1 ReactionNot made up. Dr Scalcini, head of internal med was one of docs I saw regularly for year at Mayo -R. She prescribed 25 mg slow release Iron and 500mg of Vitamin C and it stopped my ER trips in the middle of night for IV Ativan, No more restless legs.
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1 ReactionMy internist - Dr. Scalcini at Mayo R, ordered iron25mg and viyamiC everyday and the “restless legs have been sopped for 4 yrs.
My symptoms started with physical lighting bolt myoclonic jerks. Mainly starting with pre-sleep levels. I had been hospitalized for a bowel blockage. aAter relief, the myoclonic jerks started in the hospital. I also developed weakness. The stay in the hospital was extended and I qualified for Skilled nursing at Taos Living Center. The hospital called my leg jerks Restless leg syndrome as does the Academy for sleep disorders.The DIAGNOSIS DOES NOT FIT. Periodic leg Movement and Restless leg syndrome by the book take place during sleep. I was given a .5 mg Ropinole that helped. I also found the weaakness in the hospital and Skilled Nursing was from too much Calcium---hypercalcimia. To help the nerves heal, I was given gabpintine 300 mg capsules( PLEASE BE AWARE FOLKS_MANY DOCTORS DO NOT KNOW THERE ARE THREE MAKERS OF GABIPENTIN)I Had Neuruo Gabpintine for nerve repair and anti-seizure. This works well with me in combintion with LOW doses od .5md ropinole.. Horizon Gabipintin makes 600 mg pills.( It is not ususal to hear of 2400mg being used for restless leg syndrome or periodic leg movement disorder) Another maker is more for Shingles. I menttion this because my Myoclonic Jerks happen any time I experience pre or post sleep. This correlates with the periods after noon and evening meals. I have had to take .5 mg ropinole 1 hour before meals to head off the painful jerk.(Remember, for lack of a better term, they referr to this as Restless leg syndrome. Some Italians did a day time study and determined Restless leg syndrome takes place more in the morning and Periodic leg movement more in the after noon.(I am the only one saying it is pre and post sleep initiated.) My early morning post sleep jerls are soft and weak. So, I get up, wake up more by walking them off and go back to sleep ar 5:00 PM in the Morning. My Brain scan showed normal for a 90 years old man But, no tumors. My endocornologist only deals with parathyroid, so I am starting on Vitamin D suppliments and testing in 6 weeks. So. who does Ferrin Prrscriptions?The neurosurgeon, neurologist, and endoconologist all refused. So, I was told to wait until my 6 week lab test before going back to my primary Care Physician to ask for the Ferrin Test. Does this all seem to familiar to you all? Meanwhile I am on potassium suppliment and stopped the Reclasp injections for Osterpenia. My physical Therapy has gotten me back to square one. But I need a walker because of L-5,S-1 Stenosis, etc. I got off the high doses of pain pills for my back and C5,6 neuropathy I take Tramodol 50 mg 2 times a day. All my medications are kept at the minimum levels and I deal with my remaining pain and sleep with Open Focus Visualization (Google Les Fehmi Ph. D.Princeton U. or Navy Seals sleep method). I avoid increases ,since It leads to Augmenttion. When all is said and done, please listen and seek the best in medical Physicians. Do not add or subtract medications yourself.But, you must be PRO-ACTIVE for yoursleves. Do NOT BE SATIFIED WITH OLD 10 years old diagosis of your condition, when your know you do not fit the mold. Google and Google some more.Your stories do have an impact.
@bill54321 -Bill, hearing your full story intrigued me. When you were in the hospital for a bowel blockage, were you given any medications like Reglan, Compazine, Phenergan? These are all drugs, as you may know, that can cause tardive dyskinesia, or other permanent movement disorders. As is what happened in my case. Reglan was the cause of my Myoclonic jerks. It started within a couple of days of stopping Reglan. My gastro refused to say it was related. I ended up in the ER because the ability to sleep was gone due to the "shocks and violent jerks" every time I would begin to fall asleep. Immediately when I told them what medicine I had just stopped, the ER doctor told me Reglan was the cause, and it was probably permanent. He was right.
I do not know what I was given in the emergency room. Interesting. Thank you for sharing
I am new to this site, so In hope I am doing this right. My PLM started when I was in my early 40's, I am 73 now. A couple of years later RLS started and I have been on Mirapex since then. The only thing different that has helped are painkillers, I found this out when I had surgery. I could not work and stay on painkillers so I have been taking Mirapex forever and I have to be careful with it. If I take it to late at night and I be extremely sleepy the next morning. That is not a problem unless I have to drive somewhere. The odd thing about all of this is when I am a passenger in the car my RSL & PLM will start and I will have to take a mirapex, but when I am driving I don't have RLS or PLM.
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