spinal myoclonus

[Goassen]

Hei is there anyone here who knows something about spinal Myoclonus??

[auntlolo]

I have spinal myoclonus myself! Wow I felt so totally alone in this horrible condition. I have to go to accupuncture for it now so will write more very soon. Feel free to email me as well. I was told only 1 in 3 million people have this condition, "no cause", "no cure"...it has been hell. It is totally spreading and results in painful spinal spasms, neck spasms, right shoulder/arm spasms, head spasms, stomach spasms. On top of that I have palatal myoclonus where my palate spasms and my ears constantly pop. It tends to be if one myoclonus is really bad the other one is "ok". Anyhow, talk with you soon.

[theasian]

i picked up that acupuncture has managed to help and vitamin and minerals as well. i also managed to gather that you tried out rivotril as well. that stuff didn't help me at all, in fact it felt like it actually made things worse. at the moment i'm taking epilim and lamictin
take care

[Goassen]

Takk for svar.  Tenk det er noen der ute i verden som har samme diagnose som jeg.
Jeg har blitt utredet og  har hatt diagnosen i 3 år nå, men jeg blir ikke helt klok på den. Jeg har i perioder mye rykninger, har fått god hjelp av akupunktur, men det er dyrt i lengden og gå til behandling. Legen har og skrevet ut tabletter som jeg kan ta. Rivotril, men de blir jeg så utrolig trett av. Jeg er og av den typen som ikke vil ta tabletter. Er nok en dame som vil finne årsaken til hvorfor jeg har fått dette. Jeg har noen spørsmål:
Merker noen av dere at rykningene er verst når dere er i ro/slapper av??
Har noen av dere mer rykninger når dere har vært og trent, syklet, gått tur og tatt dere litt ut?? Blir dere trett av rykningene. Jeg har hatt en periode nå der jeg har vært så trett at når jeg har tatt meg en dusj, har måttet legge meg ned for å slappe av etterpå:( ER dette noe dere har merket noen gang?? Jeg har tatt masse prøver og alt av mineraler/vitaminer og målinger er helt fine. takker for svar...goassen

[suzsibs]

Hi
I have been diagnosed with spinal myoclonus, there is very little known about it and how to treat it, you will find that normally a neurologist will prescribe anti epilepsy drugs to help control it.
I have had this for the last 4 years and have not been able to find a cure, clonazepam can help but I found it made me extremely tired.
I assume you have seen a neurologist and had tests done.
I wish you all the best.
Suz

[theasian]

well, myoclonus is the involuntary twitch of a muscle or group of muscles. it can be caused by many things for example trauma to the head or spinal cord, medication, kidney/liver problems, environmental factors or something as simple as a vitamin deficiency. if they spinal myoclonus usually the twitches affect your trunk and they think that it may be of a spinal origin. that's what i gathered from when my neuro tried to explain it to me. i hope this helped. take care