Re: Rest;less Leg Syndrome

[Guest guest]

Dot & Rose

I take Quinine for the night time kicking/leg thing. I

haven't had any side effects & if I come down with

malaria I'm covered. LOL It's pretty cheap too. $25.00

a month since I don't have insurance now & medicare

doesn't kick in until November.

grannylunatic@...

__________________________________________________

[Guest guest]

Dot & Rose

I take Quinine for the night time kicking/leg thing. I

haven't had any side effects & if I come down with

malaria I'm covered. LOL It's pretty cheap too. $25.00

a month since I don't have insurance now & medicare

doesn't kick in until November.

grannylunatic@...

__________________________________________________

[Guest guest]

Dot & Rose

I take Quinine for the night time kicking/leg thing. I

haven't had any side effects & if I come down with

malaria I'm covered. LOL It's pretty cheap too. $25.00

a month since I don't have insurance now & medicare

doesn't kick in until November.

grannylunatic@...

__________________________________________________

[Guest guest]

Like the majority, RLS seems to be a problem for many of us. I too am on Sinemet for it. I take 2 tablets 25/100 Carbo/Levodopa for it. (Generic Sinemet.)

You may want to try increasing your Vitamin B's-- they are finding a connection that shows a long-term defiency in RLS and in Parkinsons. It would be worth a try.

Sinemet is ok, but it does make you very sleepy, so you wouldn't want to have to take too much. It is what they prescribe for Parkinsons--and you can become tolerant to it--so I would want to use the lowest dose possible.

Sinemet along with Neurontin seems to help also.

You may want to do a search for Vit B and Restless Leg Syndrome--and see what you can find.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

Like the majority, RLS seems to be a problem for many of us. I too am on Sinemet for it. I take 2 tablets 25/100 Carbo/Levodopa for it. (Generic Sinemet.)

You may want to try increasing your Vitamin B's-- they are finding a connection that shows a long-term defiency in RLS and in Parkinsons. It would be worth a try.

Sinemet is ok, but it does make you very sleepy, so you wouldn't want to have to take too much. It is what they prescribe for Parkinsons--and you can become tolerant to it--so I would want to use the lowest dose possible.

Sinemet along with Neurontin seems to help also.

You may want to do a search for Vit B and Restless Leg Syndrome--and see what you can find.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

Like the majority, RLS seems to be a problem for many of us. I too am on Sinemet for it. I take 2 tablets 25/100 Carbo/Levodopa for it. (Generic Sinemet.)

You may want to try increasing your Vitamin B's-- they are finding a connection that shows a long-term defiency in RLS and in Parkinsons. It would be worth a try.

Sinemet is ok, but it does make you very sleepy, so you wouldn't want to have to take too much. It is what they prescribe for Parkinsons--and you can become tolerant to it--so I would want to use the lowest dose possible.

Sinemet along with Neurontin seems to help also.

You may want to do a search for Vit B and Restless Leg Syndrome--and see what you can find.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

Dot I have RLS(Restless Leg Syndrome) tere are no over the counter meds for this. The prescription drugs used for RLS are Mirapex and Requip. When you did your sleep study, did the also put the cpap or apap with a mask on your face? If so you need to know your pressures. There is an excellent CPAP forum at http://cpap.com We dicuss the best treatment, machines, masks humidifiers and hose covers and heated hose. You may want to drop by and visit. Sharon L. Schuckman Dot wrote: Hi -- Greetings from Missouri I did a sleep study on Monday, and they said I had restless leg syndrome. I jerk my legs in my sleep over 100 times. Anyway, that is why I am exhausted in the morning- I do not get enough REM sleep. I haven't seen the Dr. yet about this. Is there over the counter meds for this?

Is there something simply like "eat a banana"? I would appreciate any information on this. Dot Yahoo! Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it!

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[Guest guest]

As well as being diagnosed with RLS, has any one been diagnosed with Sleep Apnea? Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do with sleeping and not getting enough oxygen when we sleep. Some signs of Sleep Apnea, weight gain, irretibility, diabetes, sleepy during the day and the doctor thinks it is Narcolepsy when it isn't, RLS heart trouble. Sharon L. Schuckman ResMed APAP and Hans Rudolph Full Face Mask tiodaat@... wrote: Like the majority, RLS seems to be a problem for many of us. I too am on Sinemet for it. I take 2 tablets 25/100 Carbo/Levodopa for it. (Generic Sinemet.)You may want to try increasing your Vitamin B's-- they are finding a connection that shows a long-term defiency in RLS and in Parkinsons. It would be worth a try. Sinemet is ok, but it does make you very sleepy, so you wouldn't want to have to take too much. It is what they prescribe for Parkinsons--and you can become tolerant to it--so I would want to use the lowest dose possible.Sinemet along with Neurontin seems to help also. You may want to do a search

for Vit B and Restless Leg Syndrome--and see what you can find.Sincerely,TracieNS Co-owner/moderator

Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Is the restless leg syndrome part of the sard, or is this ailment anone could get? DotRose wrote: , I take Quinine also, but for muscle cramping all over. A few months after the systemic symptoms began, I started having muscle cramps in places I didn't know had muscles! Like the outside of my ankles. I couldn't reach behind me without my arm, shoulder & side all going into spasm. A nurse at work mentioned that her dad had cramps like that & took Quinine for it. I asked my neuro & he said, sure, let's try it. I stopped once for a couple of months, just because it tastes nasty, but the cramps came back. Now I just try to toss it way back into my mouth, past the taste buds! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 00:17:27 -0800 (PST)Dot & Rose I take Quinine for the night time kicking/leg thing. Ihaven't had any side effects & if I come down withmalaria I'm covered. LOL It's pretty cheap too. $25.00a month since I don't have insurance now &

medicaredoesn't kick in until November.grannylunatic@...__________________________________________________ Get a bird’s eye view of your home with Windows Live Local

Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Is the restless leg syndrome part of the sard, or is this ailment anone could get? DotRose wrote: , I take Quinine also, but for muscle cramping all over. A few months after the systemic symptoms began, I started having muscle cramps in places I didn't know had muscles! Like the outside of my ankles. I couldn't reach behind me without my arm, shoulder & side all going into spasm. A nurse at work mentioned that her dad had cramps like that & took Quinine for it. I asked my neuro & he said, sure, let's try it. I stopped once for a couple of months, just because it tastes nasty, but the cramps came back. Now I just try to toss it way back into my mouth, past the taste buds! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 00:17:27 -0800 (PST)Dot & Rose I take Quinine for the night time kicking/leg thing. Ihaven't had any side effects & if I come down withmalaria I'm covered. LOL It's pretty cheap too. $25.00a month since I don't have insurance now &

medicaredoesn't kick in until November.grannylunatic@...__________________________________________________ Get a bird’s eye view of your home with Windows Live Local

Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Is the restless leg syndrome part of the sard, or is this ailment anone could get? DotRose wrote: , I take Quinine also, but for muscle cramping all over. A few months after the systemic symptoms began, I started having muscle cramps in places I didn't know had muscles! Like the outside of my ankles. I couldn't reach behind me without my arm, shoulder & side all going into spasm. A nurse at work mentioned that her dad had cramps like that & took Quinine for it. I asked my neuro & he said, sure, let's try it. I stopped once for a couple of months, just because it tastes nasty, but the cramps came back. Now I just try to toss it way back into my mouth, past the taste buds! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 00:17:27 -0800 (PST)Dot & Rose I take Quinine for the night time kicking/leg thing. Ihaven't had any side effects & if I come down withmalaria I'm covered. LOL It's pretty cheap too. $25.00a month since I don't have insurance now &

medicaredoesn't kick in until November.grannylunatic@...__________________________________________________ Get a bird’s eye view of your home with Windows Live Local

Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Dot, anyone can get RLS or PLMD, but it seems to be more common in sarc patients. Or maybe it's just that we get tested & diagnosed! When I told a midwife friend that my sleep study showed PLMD, she said, "I could have told you that!" She said that for years, she tried to avoid sharing a bed with me at conferences, because my jumpy legs would keep her awake. Sometimes she slept on the floor. I thought it was her back! I was totally unaware of this until years later, when I had the first sleep study.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 13:48:58 -0800 (PST)

Is the restless leg syndrome part of the sard, or is this ailment anone could get?

DotRose wrote:

, I take Quinine also, but for muscle cramping all over. A few months after the systemic symptoms began, I started having muscle cramps in places I didn't know had muscles! Like the outside of my ankles. I couldn't reach behind me without my arm, shoulder & side all going into spasm. A nurse at work mentioned that her dad had cramps like that & took Quinine for it. I asked my neuro & he said, sure, let's try it. I stopped once for a couple of months, just because it tastes nasty, but the cramps came back. Now I just try to toss it way back into my mouth, past the taste buds!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 00:17:27 -0800 (PST)Dot & Rose I take Quinine for the night time kicking/leg thing. Ihaven't had any side effects & if I come down withmalaria I'm covered. LOL It's pretty cheap too. $25.00a month since I don't have insurance now & medicaredoesn't kick in until November.grannylunatic@...__________________________________________________

Get a bird’s eye view of your home with Windows Live Local

Yahoo! Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it! ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Sharon, I've had 3 sleep studies, all looking specifically for sleep apnea, and they were all negative for it, even at my peak Pred. weight. But I have other sleep disorders that keep me from getting restorative sleep.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 12:41:34 -0800 (PST)

As well as being diagnosed with RLS, has any one been diagnosed with Sleep Apnea?

Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do with sleeping and not getting enough oxygen when we sleep.

Some signs of Sleep Apnea, weight gain, irretibility, diabetes, sleepy during the day and the doctor thinks it is Narcolepsy when it isn't, RLS heart trouble.

Sharon L. Schuckman

ResMed APAP and Hans Rudolph Full Face Mask

tiodaat@... wrote:

Like the majority, RLS seems to be a problem for many of us. I too am on Sinemet for it. I take 2 tablets 25/100 Carbo/Levodopa for it. (Generic Sinemet.)You may want to try increasing your Vitamin B's-- they are finding a connection that shows a long-term defiency in RLS and in Parkinsons. It would be worth a try. Sinemet is ok, but it does make you very sleepy, so you wouldn't want to have to take too much. It is what they prescribe for Parkinsons--and you can become tolerant to it--so I would want to use the lowest dose possible.Sinemet along with Neurontin seems to help also. You may want to do a search for Vit B and Restless Leg Syndrome--and see what you can find.Sincerely,TracieNS Co-owner/moderator

Yahoo! PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Sharon, I've had 3 sleep studies, all looking specifically for sleep apnea, and they were all negative for it, even at my peak Pred. weight. But I have other sleep disorders that keep me from getting restorative sleep.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 12:41:34 -0800 (PST)

As well as being diagnosed with RLS, has any one been diagnosed with Sleep Apnea?

Sleep Apnea and Sarcoidosis seem to go hand in hand since it has to do with sleeping and not getting enough oxygen when we sleep.

Some signs of Sleep Apnea, weight gain, irretibility, diabetes, sleepy during the day and the doctor thinks it is Narcolepsy when it isn't, RLS heart trouble.

Sharon L. Schuckman

ResMed APAP and Hans Rudolph Full Face Mask

tiodaat@... wrote:

Like the majority, RLS seems to be a problem for many of us. I too am on Sinemet for it. I take 2 tablets 25/100 Carbo/Levodopa for it. (Generic Sinemet.)You may want to try increasing your Vitamin B's-- they are finding a connection that shows a long-term defiency in RLS and in Parkinsons. It would be worth a try. Sinemet is ok, but it does make you very sleepy, so you wouldn't want to have to take too much. It is what they prescribe for Parkinsons--and you can become tolerant to it--so I would want to use the lowest dose possible.Sinemet along with Neurontin seems to help also. You may want to do a search for Vit B and Restless Leg Syndrome--and see what you can find.Sincerely,TracieNS Co-owner/moderator

Yahoo! PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Sharon, you might be right. I know that a person can have both RLS & PLMD. I'll have to do some more research. Thanks for pointing that out.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Rest;less Leg SyndromeDate: Thu, 19 Jan 2006 12:33:12 -0800 (PST)

Rose, I beg to differ with you on this. The leg movement at night with those of Sleep Apnea is definitely RLS. I know I have it. Yes I also have the movement when awake.

Medictations for RLS are either Mirapex or Requip.

Sharon L. Schuckman

Rose wrote:

Dot, it sounds like you actually have PLMD (Periodic Limb Movement Disorder), which is different from RLS (Restless Legs Syndrome). They are often mixed up. Hopefully, your doctor will know the difference. RLS is experienced while you are awake; you can't lie still, can't hold your legs still, feels like bugs crawling on you, or water running on your legs. PLMD occurs during sleep & you are unaware of it, although any bedmates probably know about it. Your legs jump frequently. It can happen enough to actually rouse you, but you won't remember it. And yes, it keeps you from the deep, restorative sleep. The first sleep study I had several years ago show PLMD to the point I was arousing every 6-8 seconds! No wonder I felt tired & my legs ached all the time. My neuro put me on Klonopin 1mg at night & that has worked well for years. I tried going off it a couple of years ago & within a few weeks went back on. My legs just hurt too much. I tolerate it well, it's really cheap & it works. When my daughter came up here from Texas last summer to detox from benzodiazapams (including Xanax, Valium AND Klonopin), I was a little concerned about continuing it. But she had a severe addiction, was on much higher doses (12mg a day, prescribed by a psychiatrist, no less); so after discussing it with my neuro, I decided to keep taking it.

However, if you have a history of prescription drug addiction, especially any benzos, I would be very careful about taking Klonopin.

Here is a pretty good website:

http://www.sleepscene.com/plmd.htm Hope this helps!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: Rest;less Leg SyndromeDate: Wed, 18 Jan 2006 21:48:38 -0800 (PST)

Hi -- Greetings from Missouri

I did a sleep study on Monday, and they said I had restless leg syndrome. I jerk my legs in my sleep over 100 times. Anyway, that is why I am exhausted in the morning- I do not get enough REM sleep. I haven't seen the Dr. yet about this. Is there over the counter meds for this? Is there something simply like "eat a banana"?

I would appreciate any information on this.

Dot

Yahoo! Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it! ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Dot, anyone can get Restless Leg Syndrome. SharonDot wrote: Is the restless leg syndrome part of the sard, or is this ailment anone could get? Dot Sharon L. Schuckman sharupac@... http://www.mannapages.com/sharonlynn

Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Dot, anyone can get Restless Leg Syndrome. SharonDot wrote: Is the restless leg syndrome part of the sard, or is this ailment anone could get? Dot Sharon L. Schuckman sharupac@... http://www.mannapages.com/sharonlynn

Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Rose I bet anything a CPAP would help you even though you are showing negative signs of Sleep Apnea. Remember when the doctor was treating for Narcolepsy and I was positive for Sleep Apnea. Seems some doctors like to push pills instead of the proper treatment. What was your Rem? Did you have any episodes at night where you stopped breathing, even though he said you were negative for OSA? Sorry for the questions, but this is eally important when you cannot sleep correctly. Sharon Rose wrote: Sharon, I've had 3 sleep studies, all looking specifically for sleep apnea, and they were all negative for it, even at my peak Pred. weight. But I have other sleep disorders that keep me from getting restorative sleep. Ramblin' Rose Moderator Sharon L.

Schuckman sharupac@... http://www.mannapages.com/sharonlynn

Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Like Tracie said, many of us have RLS, I have it too, I have found

Lorazapam helpful for me, I started out on 1mg hs, and now I take 2mgs

hs, and if I have to get up at night with the legs going crazy, I take

another 1mg, but that's the max. I do take a multi vitamin with extra

B in it too.

Marla

Like the majority, RLS seems to be a

problem for many of us. I too am on Sinemet for it. I take 2 tablets

25/100 Carbo/Levodopa for it. (Generic Sinemet.)

You may want to try increasing your Vitamin B's-- they are finding a

connection that shows a long-term defiency in RLS and in Parkinsons.

It would be worth a try.

Sinemet is ok, but it does make you very sleepy, so you wouldn't want

to have to take too much. It is what they prescribe for

Parkinsons--and you can become tolerant to it--so I would want to use

the lowest dose possible.

Sinemet along with Neurontin seems to help also.

You may want to do a search for Vit B and Restless Leg Syndrome--and

see what you can find.

Sincerely,

Tracie

NS Co-owner/moderator

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Like Tracie said, many of us have RLS, I have it too, I have found

Lorazapam helpful for me, I started out on 1mg hs, and now I take 2mgs

hs, and if I have to get up at night with the legs going crazy, I take

another 1mg, but that's the max. I do take a multi vitamin with extra

B in it too.

Marla

Like the majority, RLS seems to be a

problem for many of us. I too am on Sinemet for it. I take 2 tablets

25/100 Carbo/Levodopa for it. (Generic Sinemet.)

You may want to try increasing your Vitamin B's-- they are finding a

connection that shows a long-term defiency in RLS and in Parkinsons.

It would be worth a try.

Sinemet is ok, but it does make you very sleepy, so you wouldn't want

to have to take too much. It is what they prescribe for

Parkinsons--and you can become tolerant to it--so I would want to use

the lowest dose possible.

Sinemet along with Neurontin seems to help also.

You may want to do a search for Vit B and Restless Leg Syndrome--and

see what you can find.

Sincerely,

Tracie

NS Co-owner/moderator

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Am I the only one on Quinine? My former neuro that

tested me with hat pins is the one that prescribed it

& I was wondering if I should be on something else for

that night kicking. I live alone so I don't know if I

still kick but I feel better when I take it.

grannylunatic@...

__________________________________________________

[Guest guest]

Am I the only one on Quinine? My former neuro that

tested me with hat pins is the one that prescribed it

& I was wondering if I should be on something else for

that night kicking. I live alone so I don't know if I

still kick but I feel better when I take it.

grannylunatic@...

__________________________________________________

[Guest guest]

Oh crap & I thought the stiffness I was beginning to

get in my muscles was just from being tired & lazy &

not getting enough exercise. I agree on the Quinine

taste. That's the nastiest thing I've ever had & I've

had liquid iron. LOL Couldn't they flavor it?

grannylunatic@...

__________________________________________________

[Guest guest]

Oh crap & I thought the stiffness I was beginning to

get in my muscles was just from being tired & lazy &

not getting enough exercise. I agree on the Quinine

taste. That's the nastiest thing I've ever had & I've

had liquid iron. LOL Couldn't they flavor it?

grannylunatic@...

__________________________________________________

[Guest guest]

The bee sting feeling followed by a leg kick during

the day was my first set of symptoms. The Neurontin

took care of the daytime stuff but not the nighttime.

Could the nighttime be something completely different

than the sarc?

grannylunatic@...

__________________________________________________