Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Darla, Can you possibly video tape these episodes and bring it into your neuro the next time you see them... and see what they think they are?... I know with my daughter we video tape alot of things to get doctors to finally understand what we are talking about... a better insight if you will... Good luck, NettyDarla Klein wrote: She had seizure testing during the sleep study that diagnosed the restless leg syndrome and there were no seen seizures so am assuming it's not seizures.See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Restless leg syndrome vs. muscle spasms- ?'s>>> > Could this be dystonia?... My daughter has dystonia and restless leg> > syndrome... we noticed when we put her on L-dopa that she sleeped better> > at night... no more crying and no more waking at night...> > Netty mom to Akasha (atypical Rett syndrome negative genetic testing> > possible mito disorder)> >> > Darla Klein wrote:> > To those who have experience with restless leg syndrome, have you> > ever> > noticed one side worse than the other and also, does your arm/hand also> > jerk? Before we raised Asenath's Topamax almost two years ago, her > > right> > side only (arm and leg) would jerk every night, but not her left side.> > NOW,> > Zipporrah has been exhibiting the same symptoms (right side only, leg > > and> > arm both involved). She has been dealing with it for the past > > approximate> > 6> > months. The docs were thinking low iron was the issue, but even with > > iron> > drops and her iron raised to 11 (finger poke-unsure about other levels > > at> > this point), she still is jerking just as bad as before. I have had the> > same issue at the end of the day after relaxing in bed or on bad days> > while> > sitting that seem to be more of an issue of muscle spasms from > > overexerted> > muscles that are weak and am wondering if this may be more likely as > > well.> > Any opinions welcome on the subject. > >> >> > See www.caringbridge.org/ia/mitomomof9 and this link to see a real look> > into> > Mito using a photo collage of my girls at www.heartbeatsformito.org> > Darla: mommy to> > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,> > hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...> > Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction,> > SID,> > GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,> > disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping> > syndrome, iron deficiency...> > Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & > > Marquis (2) (some with Mito symptoms)> >> >> > Please contact mito-owner with any problems or > > questions.> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 The restless leg syndrome was diagnosed through video EEG and sleep study so they did see the movements on video. They are not seizure related. Muscular spasms are the most realistic. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Restless leg syndrome vs. muscle spasms- ?'s > > > > > > > Could this be dystonia?... My daughter has dystonia and restless leg > > > syndrome... we noticed when we put her on L-dopa that she sleeped > > > better > > > at night... no more crying and no more waking at night... > > > Netty mom to Akasha (atypical Rett syndrome negative genetic testing > > > possible mito disorder) > > > > > > Darla Klein wrote: > > > To those who have experience with restless leg syndrome, have > > > you > > > ever > > > noticed one side worse than the other and also, does your arm/hand > > > also > > > jerk? Before we raised Asenath's Topamax almost two years ago, her > > > right > > > side only (arm and leg) would jerk every night, but not her left side. > > > NOW, > > > Zipporrah has been exhibiting the same symptoms (right side only, leg > > > and > > > arm both involved). She has been dealing with it for the past > > > approximate > > > 6 > > > months. The docs were thinking low iron was the issue, but even with > > > iron > > > drops and her iron raised to 11 (finger poke-unsure about other levels > > > at > > > this point), she still is jerking just as bad as before. I have had > > > the > > > same issue at the end of the day after relaxing in bed or on bad days > > > while > > > sitting that seem to be more of an issue of muscle spasms from > > > overexerted > > > muscles that are weak and am wondering if this may be more likely as > > > well. > > > Any opinions welcome on the subject. > > > > > > > > > See www.caringbridge.org/ia/mitomomof9 and this link to see a real > > > look > > > into > > > Mito using a photo collage of my girls at www.heartbeatsformito.org > > > Darla: mommy to > > > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, > > > G-tube, > > > hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic > > > vomiting... > > > Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, > > > SID, > > > GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian > > > artery, > > > disautonomy, hypo & hypertonicity, migraines, possible seizures, > > > dumping > > > syndrome, iron deficiency... > > > Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), > > > & > > > Marquis (2) (some with Mito symptoms) > > > > > > > > > Please contact mito-owner with any problems or > > > questions. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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