Re: Restless Leg Syndrome in full force!

January 16, 2005

How much folic acid are you taking a day?

mitomomtoo wrote:

>Okay, I know we have discussed this many times before, but I am

>really suffering with RLS the last 3-4 days. I went to the movies

>last night and the entire time my calves kept twiching and cramping.

>I came home and rested but the I got worse during the night! I was

>up so many times trying to reposition myself so that I would not be

>putting pressure on my legs. Unfortunately this did not good and I am

>feeling the effects of this this morning. I have had bouts of

>myopathy that have been so severe I have spent 6 months in a

>wheelchair. I often need to use a cane or walker when the myopathy

>gets severe. I have taken Quinine in the past but my old Neuro took

>me off of it and put me on Folic Acid Supplements over the counter.

>When I get in one of these bouts I am sure to trigger a myopathy that

>will make my legs like " jelly " . My legs are already beginning to

>buckle. I can tell that I am going to end up wobbeling around my

>house all day. I am stubborn and I will only use the cane or walker

>when I absolutely need to..........maybe not the brightest but it

>emotionally makes me feel like I have some control. , LOL.

>I was wondering if any of you who also suffer with RLS can give me

>some advise about what I can do to get over this episode. I am going

>to the doc (PCP) tomorrow for a F/U for my neck and PT I have been

>in for several months. I plan to ask him if going back on the Quinine

>will be helpful. Dr Cohen started me on it several years ago and

>although the symptoms didn't disappear it did seem to be less

>bothersome. My old Neuro decided that the Quinine wasn't good for me

>and felt the Folic Acid was a better choice for the long term.

>

>Thanks for any help you can send my way!

>

>Ps Welcome to our lastest member!

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

January 16, 2005

Thanks for the quick reply! I am taking 800 mcg but it obviously

doesn't seem to be helping at all.

>

> >Okay, I know we have discussed this many times before, but I am

> >really suffering with RLS the last 3-4 days. I went to the movies

> >last night and the entire time my calves kept twiching and

cramping.

> >I came home and rested but the I got worse during the night! I

was

> >up so many times trying to reposition myself so that I would not

be

> >putting pressure on my legs. Unfortunately this did not good and I

am

> >feeling the effects of this this morning. I have had bouts of

> >myopathy that have been so severe I have spent 6 months in a

> >wheelchair. I often need to use a cane or walker when the myopathy

> >gets severe. I have taken Quinine in the past but my old Neuro

took

> >me off of it and put me on Folic Acid Supplements over the

counter.

> >When I get in one of these bouts I am sure to trigger a myopathy

that

> >will make my legs like " jelly " . My legs are already beginning to

> >buckle. I can tell that I am going to end up wobbeling around my

> >house all day. I am stubborn and I will only use the cane or

walker

> >when I absolutely need to..........maybe not the brightest but it

> >emotionally makes me feel like I have some control. , LOL.

> >I was wondering if any of you who also suffer with RLS can give me

> >some advise about what I can do to get over this episode. I am

going

> >to the doc (PCP) tomorrow for a F/U for my neck and PT I have

been

> >in for several months. I plan to ask him if going back on the

Quinine

> >will be helpful. Dr Cohen started me on it several years ago and

> >although the symptoms didn't disappear it did seem to be less

> >bothersome. My old Neuro decided that the Quinine wasn't good for

me

> >and felt the Folic Acid was a better choice for the long term.

> >

> >Thanks for any help you can send my way!

> >

> >Ps Welcome to our lastest member!

> >

> >Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

> >

> >Personal attacks are not permitted on the list and anyone who

sends one is automatically moderated or removed depending on the

severity of the attack.

> >

January 16, 2005

I don't have restleg syndrome, but Dr. C has me on 4 mg of folic acid a

day just as one of my supplements, even though no deficiency was found.

It is a Rx. I take 4 1mg tabs a day.

" Physicians may suggest that certain individuals take supplements to

correct deficiencies in iron, folate, and magnesium. " Taken from the

National Institute of Neurological Disorders and Stroke.

mitomomtoo wrote:

>

>Thanks for the quick reply! I am taking 800 mcg but it obviously

>doesn't seem to be helping at all.

>

>>

>>>Okay, I know we have discussed this many times before, but I am

>>>really suffering with RLS the last 3-4 days. I went to the movies

>>>last night and the entire time my calves kept twiching and

>>>

>cramping.

>

>>>I came home and rested but the I got worse during the night! I

>>>

>was

>

>>>up so many times trying to reposition myself so that I would not

>>>

>be

>

>>>putting pressure on my legs. Unfortunately this did not good and I

>>>

>am

>

>>>feeling the effects of this this morning. I have had bouts of

>>>myopathy that have been so severe I have spent 6 months in a

>>>wheelchair. I often need to use a cane or walker when the myopathy

>>>gets severe. I have taken Quinine in the past but my old Neuro

>>>

>took

>

>>>me off of it and put me on Folic Acid Supplements over the

>>>

>counter.

>

>>>When I get in one of these bouts I am sure to trigger a myopathy

>>>

>that

>

>>>will make my legs like " jelly " . My legs are already beginning to

>>>buckle. I can tell that I am going to end up wobbeling around my

>>>house all day. I am stubborn and I will only use the cane or

>>>

>walker

>

>>>when I absolutely need to..........maybe not the brightest but it

>>>emotionally makes me feel like I have some control. , LOL.

>>>I was wondering if any of you who also suffer with RLS can give me

>>>some advise about what I can do to get over this episode. I am

>>>

>going

>

>>>to the doc (PCP) tomorrow for a F/U for my neck and PT I have

>>>

>been

>

>>>in for several months. I plan to ask him if going back on the

>>>

>Quinine

>

>>>will be helpful. Dr Cohen started me on it several years ago and

>>>although the symptoms didn't disappear it did seem to be less

>>>bothersome. My old Neuro decided that the Quinine wasn't good for

>>>

>me

>

>>>and felt the Folic Acid was a better choice for the long term.

>>>

>>>Thanks for any help you can send my way!

>>>

>>>Ps Welcome to our lastest member!

>>>

>>>Medical advice, information, opinions, data and statements

>>>

>contained herein are not necessarily those of the list moderators.

>The author of this e mail is entirely responsible for its content.

>List members are reminded of their responsibility to evaluate the

>content of the postings and consult with their physicians regarding

>changes in their own treatment.

>

>>>Personal attacks are not permitted on the list and anyone who

>>>

>sends one is automatically moderated or removed depending on the

>severity of the attack.

>

>>>

January 16, 2005

Thanks for the info. I will ask my doc about it tomorrow. I hope that

I will see an improvement today just by resting. It is the oddest

feeling to look down at your legs and see them " moving and twitching "

all by themselves. It is actually quite annoying along with

uncomfortable.

Chrsitine

> >>

> >>>Okay, I know we have discussed this many times before, but I am

> >>>really suffering with RLS the last 3-4 days. I went to the

movies

> >>>last night and the entire time my calves kept twiching and

> >>>

> >cramping.

> >

> >>>I came home and rested but the I got worse during the night! I

> >>>

> >was

> >

> >>>up so many times trying to reposition myself so that I would not

> >>>

> >be

> >

> >>>putting pressure on my legs. Unfortunately this did not good and

I

> >>>

> >am

> >

> >>>feeling the effects of this this morning. I have had bouts of

> >>>myopathy that have been so severe I have spent 6 months in a

> >>>wheelchair. I often need to use a cane or walker when the

myopathy

> >>>gets severe. I have taken Quinine in the past but my old Neuro

> >>>

> >took

> >

> >>>me off of it and put me on Folic Acid Supplements over the

> >>>

> >counter.

> >

> >>>When I get in one of these bouts I am sure to trigger a myopathy

> >>>

> >that

> >

> >>>will make my legs like " jelly " . My legs are already beginning to

> >>>buckle. I can tell that I am going to end up wobbeling around

my

> >>>house all day. I am stubborn and I will only use the cane or

> >>>

> >walker

> >

> >>>when I absolutely need to..........maybe not the brightest but

it

> >>>emotionally makes me feel like I have some control. , LOL.

> >>>I was wondering if any of you who also suffer with RLS can give

me

> >>>some advise about what I can do to get over this episode. I am

> >>>

> >going

> >

> >>>to the doc (PCP) tomorrow for a F/U for my neck and PT I have

> >>>

> >been

> >

> >>>in for several months. I plan to ask him if going back on the

> >>>

> >Quinine

> >

> >>>will be helpful. Dr Cohen started me on it several years ago

and

> >>>although the symptoms didn't disappear it did seem to be less

> >>>bothersome. My old Neuro decided that the Quinine wasn't good

for

> >>>

> >me

> >

> >>>and felt the Folic Acid was a better choice for the long term.

> >>>

> >>>Thanks for any help you can send my way!

> >>>

> >>>Ps Welcome to our lastest member!

> >>>

> >>>Medical advice, information, opinions, data and statements

> >>>

> >contained herein are not necessarily those of the list moderators.

> >The author of this e mail is entirely responsible for its content.

> >List members are reminded of their responsibility to evaluate the

> >content of the postings and consult with their physicians

regarding

> >changes in their own treatment.

> >

> >>>Personal attacks are not permitted on the list and anyone who

> >>>

> >sends one is automatically moderated or removed depending on the

> >severity of the attack.

> >

> >>>

January 16, 2005

You are welcome. I hope you and your docs can come up with something

that helps. Maybe you can ask to have labs run on the three mentioned

in the article.

mitomomtoo wrote:

>

>Thanks for the info. I will ask my doc about it tomorrow. I hope that

>I will see an improvement today just by resting. It is the oddest

>feeling to look down at your legs and see them " moving and twitching "

>all by themselves. It is actually quite annoying along with

>uncomfortable.

>

>Chrsitine

>

>>>>

>>>>>Okay, I know we have discussed this many times before, but I am

>>>>>really suffering with RLS the last 3-4 days. I went to the

>>>>>

>movies

>

>>>>>last night and the entire time my calves kept twiching and

>>>>>

>>>cramping.

>>>

>>>>>I came home and rested but the I got worse during the night! I

>>>>>

>>>was

>>>

>>>>>up so many times trying to reposition myself so that I would not

>>>>>

>>>be

>>>

>>>>>putting pressure on my legs. Unfortunately this did not good and

>>>>>

>I

>

>>>>>

>>>am

>>>

>>>>>feeling the effects of this this morning. I have had bouts of

>>>>>myopathy that have been so severe I have spent 6 months in a

>>>>>wheelchair. I often need to use a cane or walker when the

>>>>>

>myopathy

>

>>>>>gets severe. I have taken Quinine in the past but my old Neuro

>>>>>

>>>took

>>>

>>>>>me off of it and put me on Folic Acid Supplements over the

>>>>>

>>>counter.

>>>

>>>>>When I get in one of these bouts I am sure to trigger a myopathy

>>>>>

>>>that

>>>

>>>>>will make my legs like " jelly " . My legs are already beginning to

>>>>>buckle. I can tell that I am going to end up wobbeling around

>>>>>

>my

>

>>>>>house all day. I am stubborn and I will only use the cane or

>>>>>

>>>walker

>>>

>>>>>when I absolutely need to..........maybe not the brightest but

>>>>>

>it

>

>>>>>emotionally makes me feel like I have some control. , LOL.

>>>>>I was wondering if any of you who also suffer with RLS can give

>>>>>

>me

>

>>>>>some advise about what I can do to get over this episode. I am

>>>>>

>>>going

>>>

>>>>>to the doc (PCP) tomorrow for a F/U for my neck and PT I have

>>>>>

>>>been

>>>

>>>>>in for several months. I plan to ask him if going back on the

>>>>>

>>>Quinine

>>>

>>>>>will be helpful. Dr Cohen started me on it several years ago

>>>>>

>and

>

>>>>>although the symptoms didn't disappear it did seem to be less

>>>>>bothersome. My old Neuro decided that the Quinine wasn't good

>>>>>

>for

>

>>>>>

>>>me

>>>

>>>>>and felt the Folic Acid was a better choice for the long term.

>>>>>

>>>>>Thanks for any help you can send my way!

>>>>>

>>>>>Ps Welcome to our lastest member!

>>>>>

>>>>>Medical advice, information, opinions, data and statements

>>>>>

>>>contained herein are not necessarily those of the list moderators.

>>>The author of this e mail is entirely responsible for its content.

>>>List members are reminded of their responsibility to evaluate the

>>>content of the postings and consult with their physicians

>>>

>regarding

>

>>>changes in their own treatment.

>>>

>>>>>Personal attacks are not permitted on the list and anyone who

>>>>>

>>>sends one is automatically moderated or removed depending on the

>>>severity of the attack.

>>>

>>>>>

January 16, 2005

Thanks for helping!

I am also thinking of asking about an EMG. I had one about 20 yrs ago

when I was just a " wee teenager " , LOL! The results

were " inconclusive " . I was seeing a Neuro for a " myopathy in my legs "

that had me wheelchair for 6 months. The docs thought that I was

weaned of steriods I was taking for asthma too quickly and that it

caused me to go into Cushings Syndrome. My Adrenal Glands shut down

and needed supplemental cortisone until they started working all on

there own. Which took about 8 months or so.

I wonder if an EMG might give the docs some more info on the muscle

tissue at this present time. Seems like we have all been tested for

everything under the sun at one time or an other. What's another test

right,?

There are just some days that this " Mito Game " gets SO OLD!!!

> >>>>

> >>>>>Okay, I know we have discussed this many times before, but I

am

> >>>>>really suffering with RLS the last 3-4 days. I went to the

> >>>>>

> >movies

> >

> >>>>>last night and the entire time my calves kept twiching and

> >>>>>

> >>>cramping.

> >>>

> >>>>>I came home and rested but the I got worse during the night!

I

> >>>>>

> >>>was

> >>>

> >>>>>up so many times trying to reposition myself so that I would

not

> >>>>>

> >>>be

> >>>

> >>>>>putting pressure on my legs. Unfortunately this did not good

and

> >>>>>

> >I

> >

> >>>>>

> >>>am

> >>>

> >>>>>feeling the effects of this this morning. I have had bouts of

> >>>>>myopathy that have been so severe I have spent 6 months in a

> >>>>>wheelchair. I often need to use a cane or walker when the

> >>>>>

> >myopathy

> >

> >>>>>gets severe. I have taken Quinine in the past but my old

Neuro

> >>>>>

> >>>took

> >>>

> >>>>>me off of it and put me on Folic Acid Supplements over the

> >>>>>

> >>>counter.

> >>>

> >>>>>When I get in one of these bouts I am sure to trigger a

myopathy

> >>>>>

> >>>that

> >>>

> >>>>>will make my legs like " jelly " . My legs are already beginning

to

> >>>>>buckle. I can tell that I am going to end up wobbeling around

> >>>>>

> >my

> >

> >>>>>house all day. I am stubborn and I will only use the cane or

> >>>>>

> >>>walker

> >>>

> >>>>>when I absolutely need to..........maybe not the brightest but

> >>>>>

> >it

> >

> >>>>>emotionally makes me feel like I have some control. , LOL.

> >>>>>I was wondering if any of you who also suffer with RLS can

give

> >>>>>

> >me

> >

> >>>>>some advise about what I can do to get over this episode. I

am

> >>>>>

> >>>going

> >>>

> >>>>>to the doc (PCP) tomorrow for a F/U for my neck and PT I have

> >>>>>

> >>>been

> >>>

> >>>>>in for several months. I plan to ask him if going back on the

> >>>>>

> >>>Quinine

> >>>

> >>>>>will be helpful. Dr Cohen started me on it several years ago

> >>>>>

> >and

> >

> >>>>>although the symptoms didn't disappear it did seem to be less

> >>>>>bothersome. My old Neuro decided that the Quinine wasn't good

> >>>>>

> >for

> >

> >>>>>

> >>>me

> >>>

> >>>>>and felt the Folic Acid was a better choice for the long term.

> >>>>>

> >>>>>Thanks for any help you can send my way!

> >>>>>

> >>>>>Ps Welcome to our lastest member!

> >>>>>

> >>>>>Medical advice, information, opinions, data and statements

> >>>>>

> >>>contained herein are not necessarily those of the list

moderators.

> >>>The author of this e mail is entirely responsible for its

content.

> >>>List members are reminded of their responsibility to evaluate

the

> >>>content of the postings and consult with their physicians

> >>>

> >regarding

> >

> >>>changes in their own treatment.

> >>>

> >>>>>Personal attacks are not permitted on the list and anyone who

> >>>>>

> >>>sends one is automatically moderated or removed depending on the

> >>>severity of the attack.

> >>>

> >>>>>

January 16, 2005

You're not on Paxil, are you? My brother (no mito dx) got RLS badly

when he went on it, and had a rough time deciding whether he would

stay on it or not. It also seemed that keeping his legs warm helped

a lot, like wearing long underwear even when in the house under

regular pants.

RLS may be a side effect of other meds too...

Take care,

RH

>

> Okay, I know we have discussed this many times before, but I am

> really suffering with RLS the last 3-4 days. I went to the movies

> last night and the entire time my calves kept twiching and

cramping.

> I came home and rested but the I got worse during the night! I was

> up so many times trying to reposition myself so that I would not be

> putting pressure on my legs. Unfortunately this did not good and I

am

> feeling the effects of this this morning. I have had bouts of

> myopathy that have been so severe I have spent 6 months in a

> wheelchair. I often need to use a cane or walker when the myopathy

> gets severe. I have taken Quinine in the past but my old Neuro

took

> me off of it and put me on Folic Acid Supplements over the counter.

> When I get in one of these bouts I am sure to trigger a myopathy

that

> will make my legs like " jelly " . My legs are already beginning to

> buckle. I can tell that I am going to end up wobbeling around my

> house all day. I am stubborn and I will only use the cane or walker

> when I absolutely need to..........maybe not the brightest but it

> emotionally makes me feel like I have some control. , LOL.

> I was wondering if any of you who also suffer with RLS can give me

> some advise about what I can do to get over this episode. I am

going

> to the doc (PCP) tomorrow for a F/U for my neck and PT I have been

> in for several months. I plan to ask him if going back on the

Quinine

> will be helpful. Dr Cohen started me on it several years ago and

> although the symptoms didn't disappear it did seem to be less

> bothersome. My old Neuro decided that the Quinine wasn't good for

me

> and felt the Folic Acid was a better choice for the long term.

>

> Thanks for any help you can send my way!

>

> Ps Welcome to our lastest member!

January 16, 2005

800 mcg seems pretty low to me, could you ask the doc if you should

up it? It may depend on whether you are taking a tablet, capsule,

sublingual, or powder, maybe you aren't getting all of the 800?

Take care,

RH

> >

> > >Okay, I know we have discussed this many times before, but I am

> > >really suffering with RLS the last 3-4 days. I went to the

movies

> > >last night and the entire time my calves kept twiching and

> cramping.

> > >I came home and rested but the I got worse during the night! I

> was

> > >up so many times trying to reposition myself so that I would not

> be

> > >putting pressure on my legs. Unfortunately this did not good and

I

> am

> > >feeling the effects of this this morning. I have had bouts of

> > >myopathy that have been so severe I have spent 6 months in a

> > >wheelchair. I often need to use a cane or walker when the

myopathy

> > >gets severe. I have taken Quinine in the past but my old Neuro

> took

> > >me off of it and put me on Folic Acid Supplements over the

> counter.

> > >When I get in one of these bouts I am sure to trigger a myopathy

> that

> > >will make my legs like " jelly " . My legs are already beginning to

> > >buckle. I can tell that I am going to end up wobbeling around

my

> > >house all day. I am stubborn and I will only use the cane or

> walker

> > >when I absolutely need to..........maybe not the brightest but

it

> > >emotionally makes me feel like I have some control. , LOL.

> > >I was wondering if any of you who also suffer with RLS can give

me

> > >some advise about what I can do to get over this episode. I am

> going

> > >to the doc (PCP) tomorrow for a F/U for my neck and PT I have

> been

> > >in for several months. I plan to ask him if going back on the

> Quinine

> > >will be helpful. Dr Cohen started me on it several years ago

and

> > >although the symptoms didn't disappear it did seem to be less

> > >bothersome. My old Neuro decided that the Quinine wasn't good

for

> me

> > >and felt the Folic Acid was a better choice for the long term.

> > >

> > >Thanks for any help you can send my way!

> > >

> > >Ps Welcome to our lastest member!

> > >

> > >Medical advice, information, opinions, data and statements

> contained herein are not necessarily those of the list moderators.

> The author of this e mail is entirely responsible for its content.

> List members are reminded of their responsibility to evaluate the

> content of the postings and consult with their physicians regarding

> changes in their own treatment.

> > >

> > >Personal attacks are not permitted on the list and anyone who

> sends one is automatically moderated or removed depending on the

> severity of the attack.

> > >

January 16, 2005

FYI, for those not up on converting units:

800 mcg = 0.8 mg

4 mg = 4,000 mcg

Folic acid is usually measured in micrograms, but once over 1,000

mcg, they sometimes switch to mg.

Also, taking four 1 mg tablets may be better than taking one 4 mg

tablet, because it is more likely to be absorbed better, more surface

area (even if taken at once!). I remember my mom talking to me about

taking potassium pills, that looked like they passed through her

system " unchanged " ! Not helping her out much then.

Take care,

RH

> > >>

> > >>>Okay, I know we have discussed this many times before, but I

am

> > >>>really suffering with RLS the last 3-4 days. I went to the

> movies

> > >>>last night and the entire time my calves kept twiching and

> > >>>

> > >cramping.

> > >

> > >>>I came home and rested but the I got worse during the night!

I

> > >>>

> > >was

> > >

> > >>>up so many times trying to reposition myself so that I would

not

> > >>>

> > >be

> > >

> > >>>putting pressure on my legs. Unfortunately this did not good

and

> I

> > >>>

> > >am

> > >

> > >>>feeling the effects of this this morning. I have had bouts of

> > >>>myopathy that have been so severe I have spent 6 months in a

> > >>>wheelchair. I often need to use a cane or walker when the

> myopathy

> > >>>gets severe. I have taken Quinine in the past but my old

Neuro

> > >>>

> > >took

> > >

> > >>>me off of it and put me on Folic Acid Supplements over the

> > >>>

> > >counter.

> > >

> > >>>When I get in one of these bouts I am sure to trigger a

myopathy

> > >>>

> > >that

> > >

> > >>>will make my legs like " jelly " . My legs are already beginning

to

> > >>>buckle. I can tell that I am going to end up wobbeling around

> my

> > >>>house all day. I am stubborn and I will only use the cane or

> > >>>

> > >walker

> > >

> > >>>when I absolutely need to..........maybe not the brightest but

> it

> > >>>emotionally makes me feel like I have some control. , LOL.

> > >>>I was wondering if any of you who also suffer with RLS can

give

> me

> > >>>some advise about what I can do to get over this episode. I

am

> > >>>

> > >going

> > >

> > >>>to the doc (PCP) tomorrow for a F/U for my neck and PT I have

> > >>>

> > >been

> > >

> > >>>in for several months. I plan to ask him if going back on the

> > >>>

> > >Quinine

> > >

> > >>>will be helpful. Dr Cohen started me on it several years ago

> and

> > >>>although the symptoms didn't disappear it did seem to be less

> > >>>bothersome. My old Neuro decided that the Quinine wasn't good

> for

> > >>>

> > >me

> > >

> > >>>and felt the Folic Acid was a better choice for the long term.

> > >>>

> > >>>Thanks for any help you can send my way!

> > >>>

> > >>>Ps Welcome to our lastest member!

> > >>>

> > >>>Medical advice, information, opinions, data and statements

> > >>>

> > >contained herein are not necessarily those of the list

moderators.

> > >The author of this e mail is entirely responsible for its

content.

> > >List members are reminded of their responsibility to evaluate

the

> > >content of the postings and consult with their physicians

> regarding

> > >changes in their own treatment.

> > >

> > >>>Personal attacks are not permitted on the list and anyone who

> > >>>

> > >sends one is automatically moderated or removed depending on the

> > >severity of the attack.

> > >

> > >>>

January 16, 2005

Thanks for all the help and sage advice. I will definetly check with

my Doc about the amount of Folic Acid I am taking. I am not taking

Paxil; but I am taking Buspar for Panic Attacks.

I also feel that each diet needs to be individulaized for each

person, especially those of us with Metabolic Diseases.

Thanks again,

> >

> > Okay, I know we have discussed this many times before, but I am

> > really suffering with RLS the last 3-4 days. I went to the movies

> > last night and the entire time my calves kept twiching and

> cramping.

> > I came home and rested but the I got worse during the night! I

was

> > up so many times trying to reposition myself so that I would not

be

> > putting pressure on my legs. Unfortunately this did not good and

I

> am

> > feeling the effects of this this morning. I have had bouts of

> > myopathy that have been so severe I have spent 6 months in a

> > wheelchair. I often need to use a cane or walker when the

myopathy

> > gets severe. I have taken Quinine in the past but my old Neuro

> took

> > me off of it and put me on Folic Acid Supplements over the

counter.

> > When I get in one of these bouts I am sure to trigger a myopathy

> that

> > will make my legs like " jelly " . My legs are already beginning to

> > buckle. I can tell that I am going to end up wobbeling around my

> > house all day. I am stubborn and I will only use the cane or

walker

> > when I absolutely need to..........maybe not the brightest but it

> > emotionally makes me feel like I have some control. , LOL.

> > I was wondering if any of you who also suffer with RLS can give

me

> > some advise about what I can do to get over this episode. I am

> going

> > to the doc (PCP) tomorrow for a F/U for my neck and PT I have

been

> > in for several months. I plan to ask him if going back on the

> Quinine

> > will be helpful. Dr Cohen started me on it several years ago and

> > although the symptoms didn't disappear it did seem to be less

> > bothersome. My old Neuro decided that the Quinine wasn't good for

> me

> > and felt the Folic Acid was a better choice for the long term.

> >

> > Thanks for any help you can send my way!

> >

> > Ps Welcome to our lastest member!

January 16, 2005

Just be aware that an EMG is only as good as the person doing it. It

shouldn't be very painful if in the right hands. I can't even feel my neuro

putting in the needles.

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 17:07:15 -0000

> To:

> Subject: Re: Restless Leg Syndrome in full force!

>

> Thanks for helping!

> I am also thinking of asking about an EMG. I had one about 20 yrs ago

> when I was just a " wee teenager " , LOL! The results

> were " inconclusive " . I was seeing a Neuro for a " myopathy in my legs "

> that had me wheelchair for 6 months. The docs thought that I was

> weaned of steriods I was taking for asthma too quickly and that it

> caused me to go into Cushings Syndrome. My Adrenal Glands shut down

> and needed supplemental cortisone until they started working all on

> there own. Which took about 8 months or so.

>

> I wonder if an EMG might give the docs some more info on the muscle

> tissue at this present time. Seems like we have all been tested for

> everything under the sun at one time or an other. What's another test

> right,?

>

> There are just some days that this " Mito Game " gets SO OLD!!!

>

>>>>>>

>>>>>>> Okay, I know we have discussed this many times before, but I

> am

>>>>>>> really suffering with RLS the last 3-4 days. I went to the

>>>>>>>

>>> movies

>>>

>>>>>>> last night and the entire time my calves kept twiching and

>>>>>>>

>>>>> cramping.

>>>>>

>>>>>>> I came home and rested but the I got worse during the night!

> I

>>>>>>>

>>>>> was

>>>>>

>>>>>>> up so many times trying to reposition myself so that I would

> not

>>>>>>>

>>>>> be

>>>>>

>>>>>>> putting pressure on my legs. Unfortunately this did not good

> and

>>>>>>>

>>> I

>>>

>>>>>>>

>>>>> am

>>>>>

>>>>>>> feeling the effects of this this morning. I have had bouts of

>>>>>>> myopathy that have been so severe I have spent 6 months in a

>>>>>>> wheelchair. I often need to use a cane or walker when the

>>>>>>>

>>> myopathy

>>>

>>>>>>> gets severe. I have taken Quinine in the past but my old

> Neuro

>>>>>>>

>>>>> took

>>>>>

>>>>>>> me off of it and put me on Folic Acid Supplements over the

>>>>>>>

>>>>> counter.

>>>>>

>>>>>>> When I get in one of these bouts I am sure to trigger a

> myopathy

>>>>>>>

>>>>> that

>>>>>

>>>>>>> will make my legs like " jelly " . My legs are already beginning

> to

>>>>>>> buckle. I can tell that I am going to end up wobbeling around

>>>>>>>

>>> my

>>>

>>>>>>> house all day. I am stubborn and I will only use the cane or

>>>>>>>

>>>>> walker

>>>>>

>>>>>>> when I absolutely need to..........maybe not the brightest but

>>>>>>>

>>> it

>>>

>>>>>>> emotionally makes me feel like I have some control. , LOL.

>>>>>>> I was wondering if any of you who also suffer with RLS can

> give

>>>>>>>

>>> me

>>>

>>>>>>> some advise about what I can do to get over this episode. I

> am

>>>>>>>

>>>>> going

>>>>>

>>>>>>> to the doc (PCP) tomorrow for a F/U for my neck and PT I have

>>>>>>>

>>>>> been

>>>>>

>>>>>>> in for several months. I plan to ask him if going back on the

>>>>>>>

>>>>> Quinine

>>>>>

>>>>>>> will be helpful. Dr Cohen started me on it several years ago

>>>>>>>

>>> and

>>>

>>>>>>> although the symptoms didn't disappear it did seem to be less

>>>>>>> bothersome. My old Neuro decided that the Quinine wasn't good

>>>>>>>

>>> for

>>>

>>>>>>>

>>>>> me

>>>>>

>>>>>>> and felt the Folic Acid was a better choice for the long term.

>>>>>>>

>>>>>>> Thanks for any help you can send my way!

>>>>>>>

>>>>>>> Ps Welcome to our lastest member!

>>>>>>>

>>>>>>> Medical advice, information, opinions, data and statements

>>>>>>>

>>>>> contained herein are not necessarily those of the list

> moderators.

>>>>> The author of this e mail is entirely responsible for its

> content.

>>>>> List members are reminded of their responsibility to evaluate

> the

>>>>> content of the postings and consult with their physicians

>>>>>

>>> regarding

>>>

>>>>> changes in their own treatment.

>>>>>

>>>>>>> Personal attacks are not permitted on the list and anyone who

>>>>>>>

>>>>> sends one is automatically moderated or removed depending on the

>>>>> severity of the attack.

>>>>>

>>>>>>>

January 16, 2005

I have had this for many, many years. My leg will sometimes jump 8-10

inches. My hands now do it and even though they are less painful, they are

more annoying to me.

laurie

>

> Reply-To:

> Date: Sun, 16 Jan 2005 16:49:32 -0000

> To:

> Subject: Re: Restless Leg Syndrome in full force!

>

> Thanks for the info. I will ask my doc about it tomorrow. I hope that

> I will see an improvement today just by resting. It is the oddest

> feeling to look down at your legs and see them " moving and twitching "

> all by themselves. It is actually quite annoying along with

> uncomfortable.

>

> Chrsitine

>

>>>>

>>>>> Okay, I know we have discussed this many times before, but I am

>>>>> really suffering with RLS the last 3-4 days. I went to the

> movies

>>>>> last night and the entire time my calves kept twiching and

>>>>>

>>> cramping.

>>>

>>>>> I came home and rested but the I got worse during the night! I

>>>>>

>>> was

>>>

>>>>> up so many times trying to reposition myself so that I would not

>>>>>

>>> be

>>>

>>>>> putting pressure on my legs. Unfortunately this did not good and

> I

>>>>>

>>> am

>>>

>>>>> feeling the effects of this this morning. I have had bouts of

>>>>> myopathy that have been so severe I have spent 6 months in a

>>>>> wheelchair. I often need to use a cane or walker when the

> myopathy

>>>>> gets severe. I have taken Quinine in the past but my old Neuro

>>>>>

>>> took

>>>

>>>>> me off of it and put me on Folic Acid Supplements over the

>>>>>

>>> counter.

>>>

>>>>> When I get in one of these bouts I am sure to trigger a myopathy

>>>>>

>>> that

>>>

>>>>> will make my legs like " jelly " . My legs are already beginning to

>>>>> buckle. I can tell that I am going to end up wobbeling around

> my

>>>>> house all day. I am stubborn and I will only use the cane or

>>>>>

>>> walker

>>>

>>>>> when I absolutely need to..........maybe not the brightest but

> it

>>>>> emotionally makes me feel like I have some control. , LOL.

>>>>> I was wondering if any of you who also suffer with RLS can give

> me

>>>>> some advise about what I can do to get over this episode. I am

>>>>>

>>> going

>>>

>>>>> to the doc (PCP) tomorrow for a F/U for my neck and PT I have

>>>>>

>>> been

>>>

>>>>> in for several months. I plan to ask him if going back on the

>>>>>

>>> Quinine

>>>

>>>>> will be helpful. Dr Cohen started me on it several years ago

> and

>>>>> although the symptoms didn't disappear it did seem to be less

>>>>> bothersome. My old Neuro decided that the Quinine wasn't good

> for

>>>>>

>>> me

>>>

>>>>> and felt the Folic Acid was a better choice for the long term.

>>>>>

>>>>> Thanks for any help you can send my way!

>>>>>

>>>>> Ps Welcome to our lastest member!

>>>>>

>>>>> Medical advice, information, opinions, data and statements

>>>>>

>>> contained herein are not necessarily those of the list moderators.

>>> The author of this e mail is entirely responsible for its content.

>>> List members are reminded of their responsibility to evaluate the

>>> content of the postings and consult with their physicians

> regarding

>>> changes in their own treatment.

>>>

>>>>> Personal attacks are not permitted on the list and anyone who

>>>>>

>>> sends one is automatically moderated or removed depending on the

>>> severity of the attack.

>>>

>>>>>

January 16, 2005

Laurie

What is the exact reason for all of the movement? Is it more of a

dystonia or a something different? What are you doing for it? I

remember you mentioned that you are taking Quinine, right? Is it for

this problem?

> >>>>

> >>>>> Okay, I know we have discussed this many times before, but I

am

> >>>>> really suffering with RLS the last 3-4 days. I went to the

> > movies

> >>>>> last night and the entire time my calves kept twiching and

> >>>>>

> >>> cramping.

> >>>

> >>>>> I came home and rested but the I got worse during the night!

I

> >>>>>

> >>> was

> >>>

> >>>>> up so many times trying to reposition myself so that I would

not

> >>>>>

> >>> be

> >>>

> >>>>> putting pressure on my legs. Unfortunately this did not good

and

> > I

> >>>>>

> >>> am

> >>>

> >>>>> feeling the effects of this this morning. I have had bouts of

> >>>>> myopathy that have been so severe I have spent 6 months in a

> >>>>> wheelchair. I often need to use a cane or walker when the

> > myopathy

> >>>>> gets severe. I have taken Quinine in the past but my old

Neuro

> >>>>>

> >>> took

> >>>

> >>>>> me off of it and put me on Folic Acid Supplements over the

> >>>>>

> >>> counter.

> >>>

> >>>>> When I get in one of these bouts I am sure to trigger a

myopathy

> >>>>>

> >>> that

> >>>

> >>>>> will make my legs like " jelly " . My legs are already beginning

to

> >>>>> buckle. I can tell that I am going to end up wobbeling around

> > my

> >>>>> house all day. I am stubborn and I will only use the cane or

> >>>>>

> >>> walker

> >>>

> >>>>> when I absolutely need to..........maybe not the brightest but

> > it

> >>>>> emotionally makes me feel like I have some control. , LOL.

> >>>>> I was wondering if any of you who also suffer with RLS can

give

> > me

> >>>>> some advise about what I can do to get over this episode. I

am

> >>>>>

> >>> going

> >>>

> >>>>> to the doc (PCP) tomorrow for a F/U for my neck and PT I have

> >>>>>

> >>> been

> >>>

> >>>>> in for several months. I plan to ask him if going back on the

> >>>>>

> >>> Quinine

> >>>

> >>>>> will be helpful. Dr Cohen started me on it several years ago

> > and

> >>>>> although the symptoms didn't disappear it did seem to be less

> >>>>> bothersome. My old Neuro decided that the Quinine wasn't good

> > for

> >>>>>

> >>> me

> >>>

> >>>>> and felt the Folic Acid was a better choice for the long term.

> >>>>>

> >>>>> Thanks for any help you can send my way!

> >>>>>

> >>>>> Ps Welcome to our lastest member!

> >>>>>

> >>>>> Medical advice, information, opinions, data and statements

> >>>>>

> >>> contained herein are not necessarily those of the list

moderators.

> >>> The author of this e mail is entirely responsible for its

content.

> >>> List members are reminded of their responsibility to evaluate

the

> >>> content of the postings and consult with their physicians

> > regarding

> >>> changes in their own treatment.

> >>>

> >>>>> Personal attacks are not permitted on the list and anyone who

> >>>>>

> >>> sends one is automatically moderated or removed depending on the

> >>> severity of the attack.

> >>>

> >>>>>

January 16, 2005

It is nerves that are firing even when not told to do so. I take Lamictal

and that has reduced the myoclonus a great deal. I also do gentle stretching

in the morning when my body is rested. I do have Quinine to take when

needed. It makes my bowels loose, so I only take it when necessary. My

myoclonus and cramping are worse when I have been busy or overdone. When I

am able to rest and get some extra sleep over the week-end, then it is not

as bad. I also have to keep a tight balance on my magnesium, calcium,

potassium and phosphorus. I spill these things through the kidneys, so I

have to have labs every three months or when the myoclonus and cramping get

worse. I know how irritating they can be. I just hate it when I have to jump

out of bed to put pressure on the bottoms of my feet to hopefully eliminate

a cramp. The other night, the front of my ankle was in spasm and the pain

was horrible. I couldn't get rid of it by walking on it, so I bent my knee

to get my leg onto the bed to rub it. That caused a cramp in the side of my

upper leg. For me, I think it is metabolically based. The Lamictal has done

the most for me in this area.

laurie

>

> Reply-To:

> Date: Mon, 17 Jan 2005 00:58:11 -0000

> To:

> Subject: Re: Restless Leg Syndrome in full force!

>

> Laurie

> What is the exact reason for all of the movement? Is it more of a

> dystonia or a something different? What are you doing for it? I

> remember you mentioned that you are taking Quinine, right? Is it for

> this problem?

>

>>>>>>

>>>>>>> Okay, I know we have discussed this many times before, but I

> am

>>>>>>> really suffering with RLS the last 3-4 days. I went to the

>>> movies

>>>>>>> last night and the entire time my calves kept twiching and

>>>>>>>

>>>>> cramping.

>>>>>

>>>>>>> I came home and rested but the I got worse during the night!

> I

>>>>>>>

>>>>> was

>>>>>

>>>>>>> up so many times trying to reposition myself so that I would

> not

>>>>>>>

>>>>> be

>>>>>

>>>>>>> putting pressure on my legs. Unfortunately this did not good

> and

>>> I

>>>>>>>

>>>>> am

>>>>>

>>>>>>> feeling the effects of this this morning. I have had bouts of

>>>>>>> myopathy that have been so severe I have spent 6 months in a

>>>>>>> wheelchair. I often need to use a cane or walker when the

>>> myopathy

>>>>>>> gets severe. I have taken Quinine in the past but my old

> Neuro

>>>>>>>

>>>>> took

>>>>>

>>>>>>> me off of it and put me on Folic Acid Supplements over the

>>>>>>>

>>>>> counter.

>>>>>

>>>>>>> When I get in one of these bouts I am sure to trigger a

> myopathy

>>>>>>>

>>>>> that

>>>>>

>>>>>>> will make my legs like " jelly " . My legs are already beginning

> to

>>>>>>> buckle. I can tell that I am going to end up wobbeling around

>>> my

>>>>>>> house all day. I am stubborn and I will only use the cane or

>>>>>>>

>>>>> walker

>>>>>

>>>>>>> when I absolutely need to..........maybe not the brightest but

>>> it

>>>>>>> emotionally makes me feel like I have some control. , LOL.

>>>>>>> I was wondering if any of you who also suffer with RLS can

> give

>>> me

>>>>>>> some advise about what I can do to get over this episode. I

> am

>>>>>>>

>>>>> going

>>>>>

>>>>>>> to the doc (PCP) tomorrow for a F/U for my neck and PT I have

>>>>>>>

>>>>> been

>>>>>

>>>>>>> in for several months. I plan to ask him if going back on the

>>>>>>>

>>>>> Quinine

>>>>>

>>>>>>> will be helpful. Dr Cohen started me on it several years ago

>>> and

>>>>>>> although the symptoms didn't disappear it did seem to be less

>>>>>>> bothersome. My old Neuro decided that the Quinine wasn't good

>>> for

>>>>>>>

>>>>> me

>>>>>

>>>>>>> and felt the Folic Acid was a better choice for the long term.

>>>>>>>

>>>>>>> Thanks for any help you can send my way!

>>>>>>>

>>>>>>> Ps Welcome to our lastest member!

>>>>>>>

>>>>>>> Medical advice, information, opinions, data and statements

>>>>>>>

>>>>> contained herein are not necessarily those of the list

> moderators.

>>>>> The author of this e mail is entirely responsible for its

> content.

>>>>> List members are reminded of their responsibility to evaluate

> the

>>>>> content of the postings and consult with their physicians

>>> regarding

>>>>> changes in their own treatment.

>>>>>

>>>>>>> Personal attacks are not permitted on the list and anyone who

>>>>>>>

>>>>> sends one is automatically moderated or removed depending on the

>>>>> severity of the attack.

>>>>>

>>>>>>>

January 16, 2005

> I also feel that each diet needs to be individulaized for each

> person, especially those of us with Metabolic Diseases.

I wish we could find some " metabolic nutrionists " who could answer

some questions on these subjects, regular dieticians/nutritionists

seem to be in the dark, and the neurologists don't seem to know

either.

Take care,

RH

>

> > >

> > > Okay, I know we have discussed this many times before, but I am

> > > really suffering with RLS the last 3-4 days. I went to the

movies

> > > last night and the entire time my calves kept twiching and

> > cramping.

> > > I came home and rested but the I got worse during the night! I

> was

> > > up so many times trying to reposition myself so that I would

not

> be

> > > putting pressure on my legs. Unfortunately this did not good

and

> I

> > am

> > > feeling the effects of this this morning. I have had bouts of

> > > myopathy that have been so severe I have spent 6 months in a

> > > wheelchair. I often need to use a cane or walker when the

> myopathy

> > > gets severe. I have taken Quinine in the past but my old Neuro

> > took

> > > me off of it and put me on Folic Acid Supplements over the

> counter.

> > > When I get in one of these bouts I am sure to trigger a

myopathy

> > that

> > > will make my legs like " jelly " . My legs are already beginning

to

> > > buckle. I can tell that I am going to end up wobbeling around

my

> > > house all day. I am stubborn and I will only use the cane or

> walker

> > > when I absolutely need to..........maybe not the brightest but

it

> > > emotionally makes me feel like I have some control. , LOL.

> > > I was wondering if any of you who also suffer with RLS can give

> me

> > > some advise about what I can do to get over this episode. I am

> > going

> > > to the doc (PCP) tomorrow for a F/U for my neck and PT I have

> been

> > > in for several months. I plan to ask him if going back on the

> > Quinine

> > > will be helpful. Dr Cohen started me on it several years ago

and

> > > although the symptoms didn't disappear it did seem to be less

> > > bothersome. My old Neuro decided that the Quinine wasn't good

for

> > me

> > > and felt the Folic Acid was a better choice for the long term.

> > >

> > > Thanks for any help you can send my way!

> > >

> > > Ps Welcome to our lastest member!

January 17, 2005

Laurie,

Thanks for the info on the myoclonus. I know that has had

episodes of Myoclonus when he is sleeping that have " rocked the

house " at night. I have bolted in his room to see him asleep kncoking

on the wall with one foot or hand uncontrollably. I think my

movements are possibly caused by this more than RLS to be honest.

Dr Cohen has told me that I have very brisk deep tendon reflexes in

my legs and elbows. I have been known to " get a few docs with the

feet jerk " during an exam. My current Neuro will use the 'hammer " to

check for a reflex and slide the stool back as he is doing it at the

same time-------seems I have surprised him one to many times with my

foot nailing him, LOL! I am taking Lamictal for seizures but I

haven't seen any great change in the movement disorders from it.

Off to see the PT this morning to see if the Traction Machine I used

this weekend did anything for me. Then to make an appt with the PCP

to check out more options for this darn neck and back problems. I

will also maximize this visit when I bother him about this annoying

leg cramping too. Might as well make it a multipurpose visit, right?

My older son was with me at this docs a few weeks back the day after

report cards came out. Doc asked Drew how he was doing in school.

Drew is very bright and makes straight A's. He told the doc he was

doing very well. Doc tells him " maybe you should think about becoming

a doctor like me. " Drew replies " if I did that Dr. Pinksy my Mom

would come and see me and not you and you would be taking a HUGE PAY

CUT!!!! " Out of the mouths of babes :-0)

> >>>>>>

> >>>>>>> Okay, I know we have discussed this many times before, but I

> > am

> >>>>>>> really suffering with RLS the last 3-4 days. I went to the

> >>> movies

> >>>>>>> last night and the entire time my calves kept twiching and

> >>>>>>>

> >>>>> cramping.

> >>>>>

> >>>>>>> I came home and rested but the I got worse during the night!

> > I

> >>>>>>>

> >>>>> was

> >>>>>

> >>>>>>> up so many times trying to reposition myself so that I would

> > not

> >>>>>>>

> >>>>> be

> >>>>>

> >>>>>>> putting pressure on my legs. Unfortunately this did not good

> > and

> >>> I

> >>>>>>>

> >>>>> am

> >>>>>

> >>>>>>> feeling the effects of this this morning. I have had bouts

of

> >>>>>>> myopathy that have been so severe I have spent 6 months in a

> >>>>>>> wheelchair. I often need to use a cane or walker when the

> >>> myopathy

> >>>>>>> gets severe. I have taken Quinine in the past but my old

> > Neuro

> >>>>>>>

> >>>>> took

> >>>>>

> >>>>>>> me off of it and put me on Folic Acid Supplements over the

> >>>>>>>

> >>>>> counter.

> >>>>>

> >>>>>>> When I get in one of these bouts I am sure to trigger a

> > myopathy

> >>>>>>>

> >>>>> that

> >>>>>

> >>>>>>> will make my legs like " jelly " . My legs are already

beginning

> > to

> >>>>>>> buckle. I can tell that I am going to end up wobbeling

around

> >>> my

> >>>>>>> house all day. I am stubborn and I will only use the cane or

> >>>>>>>

> >>>>> walker

> >>>>>

> >>>>>>> when I absolutely need to..........maybe not the brightest

but

> >>> it

> >>>>>>> emotionally makes me feel like I have some control. , LOL.

> >>>>>>> I was wondering if any of you who also suffer with RLS can

> > give

> >>> me

> >>>>>>> some advise about what I can do to get over this episode. I

> > am

> >>>>>>>

> >>>>> going

> >>>>>

> >>>>>>> to the doc (PCP) tomorrow for a F/U for my neck and PT I

have

> >>>>>>>

> >>>>> been

> >>>>>

> >>>>>>> in for several months. I plan to ask him if going back on

the

> >>>>>>>

> >>>>> Quinine

> >>>>>

> >>>>>>> will be helpful. Dr Cohen started me on it several years

ago

> >>> and

> >>>>>>> although the symptoms didn't disappear it did seem to be

less

> >>>>>>> bothersome. My old Neuro decided that the Quinine wasn't

good

> >>> for

> >>>>>>>

> >>>>> me

> >>>>>

> >>>>>>> and felt the Folic Acid was a better choice for the long

term.

> >>>>>>>

> >>>>>>> Thanks for any help you can send my way!

> >>>>>>>

> >>>>>>> Ps Welcome to our lastest member!

> >>>>>>>

> >>>>>>> Medical advice, information, opinions, data and statements

> >>>>>>>

> >>>>> contained herein are not necessarily those of the list

> > moderators.

> >>>>> The author of this e mail is entirely responsible for its

> > content.

> >>>>> List members are reminded of their responsibility to evaluate

> > the

> >>>>> content of the postings and consult with their physicians

> >>> regarding

> >>>>> changes in their own treatment.

> >>>>>

> >>>>>>> Personal attacks are not permitted on the list and anyone

who

> >>>>>>>

> >>>>> sends one is automatically moderated or removed depending on

the

> >>>>> severity of the attack.

> >>>>>

> >>>>>>>

January 17, 2005