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Periodic Limb Movement Disorder

Sleep Health | Last Active: Apr 30, 2023 | Replies (50)

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@bill54321

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.

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Replies to "My symptoms started with physical lighting bolt myoclonic jerks. Mainly starting with pre-sleep levels. I had..."

@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.