Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Dear Dawna, I forgot to say that often it helps to make sure you're getting enough calcium, magnesium, and potassium late in the day. And as someone else said in response to your post, nix on the caffeine after lunch: at least that's my policy. You'll be getting relief soon. All the best, Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Hi Dolores, Restless Legs Syndrome is common in adults with underlying neuromuscular problems. Given mito is a neuromuscular related disease it would not be an uncommon finding. The sleep lab where my girls have their studies done has observed RLS in several teen swith mito or suspected mito. It is very uncommon in children and teenagers. I don't know of any formal studies that have been done in sleep medicine that have looked specifically at mitochondrial disease and RLS. I suspect too few mito patients have been diagnosed at most sleep centers for them to have the ability to do a formal study looking at this specific process in this specific patient group for publication. They wouldn't have the volume required to be statistically significant. On the other hand, sleep abnormalities are very common although they seem to be a mix of obstructive apnea, central apnea, hypoventilation, hypoxia, etc. These abnormalities have all been reported and published (at least in some of the critical care journals). Both of our daughters receive ventilatory support durign sleep because of sleep disordered breathing. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 My son has restless leg syndrome. It's a neurological problem. My boy is now 16. He's probably had it for about five years, give or take. I think that neurological problems are pretty common in mito. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Myoclonus can be misdiagnosed as restless leg, especially when it occurs at night. The key seems to be the creepy crawly feeling that makes it necessary to move the legs when relaxing. I have significant myoclonus, even with treatment, but not RLS. laurie > Hi Dolores, > > Restless Legs Syndrome is common in adults with underlying neuromuscular problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 I haven't done any reading about nighttime leg movements for several years, but what I remember from previous reading suggested that periodic limb movement disorder PLMD was the diagnosis for involuntary leg movements at night when there was no neuromuscular disorder present to account for these events. Restless leg syndrome was at that time defined as the night-time creepy-crawly sensation that made one want to move the legs, but these movements were voluntary in response to a neural sensation, not involuntary twitches and jerks. For us this issue arose when my hubby began having frequent strong jerks in his legs at night, sometimes continuing for hours at a time. He was completely unaware of them though they were strong enough to shake the bed and wake me up--sometimes keeping ME awake for hours! He has no neuromuscular disorders, thus the label benign PLMD. It turns out the problem eventually resolved when he repaired his sleeping habits---he was not getting enough sleep at the time, very sleep deprived. Once he paid his sleep debt with 7+ hours sleep every night, the PLMD went away. Anyway, at that time, they were differentiating between PLMD and RLS, the former being involuntary night-time jerks and the latter night-time voluntary movements in response to a neural sensation. I have jerks in all muscles, legs included, anything from small twitches and fasciculations to whole body myoclonic jerks, but no one has ever suggested PLMD or RLS. In other words, for me the underlying neuromuscular disease would account for them, day or night. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Thanks so much I really appreciate any info at all. Dolores Joanne Kocourek servedogmom@...> wrote:Hi Dolores, Restless Legs Syndrome is common in adults with underlying neuromuscular problems. Given mito is a neuromuscular related disease it would not be an uncommon finding. The sleep lab where my girls have their studies done has observed RLS in several teen swith mito or suspected mito. It is very uncommon in children and teenagers. I don't know of any formal studies that have been done in sleep medicine that have looked specifically at mitochondrial disease and RLS. I suspect too few mito patients have been diagnosed at most sleep centers for them to have the ability to do a formal study looking at this specific process in this specific patient group for publication. They wouldn't have the volume required to be statistically significant. On the other hand, sleep abnormalities are very common although they seem to be a mix of obstructive apnea, central apnea, hypoventilation, hypoxia, etc. These abnormalities have all been reported and published (at least in some of the critical care journals). Both of our daughters receive ventilatory support durign sleep because of sleep disordered breathing. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 > Thanks so much I really appreciate any info at all. Dolores Dolores, i agree with Laurie on the common misdiagnosis of myoclonus as RLS. in my experience, people (MDs included), who don't understand the difference between myoclonus, fibrillations and fasciculations call any movement of the legs at night (even if they also occur during the day) RLS. isn't it a shame that RLS is more well known than mito? kent Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Kent, You can lump Chronic Fatigue in there too. Many that have been misdx'ed as having CFS find out later they have mito. >isn't it a shame that RLS is more well known than mito? >kent > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 , i suspect you are right. CFS (or Myalgic Ecehalopathy, as I and many others prefer) has been my diagnosis since 1999. but i know my body well enough and have found out enough about mito and IBM that i suspect i don't have ME. kent > Kent, > > You can lump Chronic Fatigue in there too. Many that have been misdx'ed > as having CFS find out later they have mito. > > > > >isn't it a shame that RLS is more well known than mito? > >kent > > > > > > Quote Link to comment Share on other sites More sharing options...
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