Re: Netty-Restless leg syndrome vs. muscle spasms- ?'s

[Guest guest]

I don't think it is dystonia. Asenath had a bout of symptoms like dystonia

for three weeks once following a large stroke in 2002 and it looked

different than this. This is jerking and almost constant movement of her

right arm and leg.

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.

>

>

>

[Guest guest]

Could it be a complex partial seizure?...

NettyDarla Klein wrote:

I don't think it is dystonia. Asenath had a bout of symptoms like dystonia for three weeks once following a large stroke in 2002 and it looked different than this. This is jerking and almost constant movement of her right arm and leg.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.>>>