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Hi Hal,

I'm really sad that you are leaving, but if it's to become another

Grishom (SP?), then go for it! Maybe you can include a main character

who has rls into a best selling novel! Now that would give us exposure!

All the best to you - you will be missed.

ne, 59, Lawrenceville, NJ

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Sharifa,

Boy can I relate. I too abused the sleeping pills, and mixed it with

drinking. So now, my options are limited to Mirapex and Tylenol PM. A lot of

us in the group get temporary relief of RLS symptoms after orgasms. If only it

were a permanent solution! But I swear folks, the Mirapex has killed my

libido. It's always a trade off isn't it? Hope everyone is well. Sweet

Dreams, Elaine, Malibu

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Sharifa,

Boy can I relate. I too abused the sleeping pills, and mixed it with

drinking. So now, my options are limited to Mirapex and Tylenol PM. A lot of

us in the group get temporary relief of RLS symptoms after orgasms. If only it

were a permanent solution! But I swear folks, the Mirapex has killed my

libido. It's always a trade off isn't it? Hope everyone is well. Sweet

Dreams, Elaine, Malibu

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  • 2 months later...
Guest guest

Hi, Becky:

I can certainly see why you are confused, so I will try not to add to it but

will tell you what my symptoms are like.

I have only experienced the creepy, crawlies briefly one or two times. The

rest of the time, my legs just feel like there is an electrical current

running through them. About the only time I don't notice this is when I'm on

my feet and moving around or when I'm asleep. Sometimes I have the same

feeling in my arms, but that is only occasionally. Like just about everyone

else, I get relief by moving my legs and/or arms. If I don't move my legs

voluntarily, they will eventually jump of their own accord.

Usually, the only pain I experience is in my feet, and if I don't take my

medication, they will hurt so much that I'll just want to curl up and wait

for the pain to subside.

You will find that we don't all have the same exact symptoms or take the same

meds, but most of it is similar. Also, many of us have other problems that

enter into the picture, but basically we're pretty much alike with the RLS.

I hope this hasn't added to your confusion. Please stick around and feel

free to contact us at anytime.

Have a good evening.

Joyce F/58/ville,Arkansas

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I move my legs because I have to due to the sensations I feel in my legs. I

also have chronic pain, so take oxycontin and vicoden es. I am sure it

helps with times where I feel trapped, like in a car or an airplane. I have

nighttime RLS under control with sinemet and klonopin once I fall asleep,

but still have problems in the daytime hours with milder RLS. Trying with

doctor to fight the right formula to treat it. Am currently researching

mirapex if it will be compatable with all my other drugs. I also take paxil

for depression. Hope this helps. If you want my full drug list, write to

me.

Nat Dean, Santa Fe, NM, 43

----------

>

>To: rlssupport (AT) onelist (DOT) com

>Subject: (no subject)

>Date: Thu, Jun 3, 1999, 12:25 PM

>

>

>

> Hi Group:

> I've written in a couple of times and talked about the creepy crawly

> feelings in my legs that lead to lots of pain, ache, and discomfort. All

> responses I've gotten from some of you who have RLS say that you don't have

> pain. Why do you take Vicodin and other pain meds??

> Do your legs move unvoluntarily or do you move them because it seems to

> help the discomfort? I'm trying to understand RLS and I'm confused!!!

> Please respond.

>

>

>

> ------------------------------------------------------------------------

> Give back to your community through " Grow to Give. "

> http://www.onelist.com

> Deadline is June 19. See homepage for details.

> ------------------------------------------------------------------------

> This forum is for support only. The information posted to this List is for

> support purposes

> and is not intended to replace the examination, diagnosis and treatment of

> a licensed

> physician and no such claims are inferred.

>

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Guest guest

I move my legs because I have to due to the sensations I feel in my legs. I

also have chronic pain, so take oxycontin and vicoden es. I am sure it

helps with times where I feel trapped, like in a car or an airplane. I have

nighttime RLS under control with sinemet and klonopin once I fall asleep,

but still have problems in the daytime hours with milder RLS. Trying with

doctor to fight the right formula to treat it. Am currently researching

mirapex if it will be compatable with all my other drugs. I also take paxil

for depression. Hope this helps. If you want my full drug list, write to

me.

Nat Dean, Santa Fe, NM, 43

----------

>

>To: rlssupport (AT) onelist (DOT) com

>Subject: (no subject)

>Date: Thu, Jun 3, 1999, 12:25 PM

>

>

>

> Hi Group:

> I've written in a couple of times and talked about the creepy crawly

> feelings in my legs that lead to lots of pain, ache, and discomfort. All

> responses I've gotten from some of you who have RLS say that you don't have

> pain. Why do you take Vicodin and other pain meds??

> Do your legs move unvoluntarily or do you move them because it seems to

> help the discomfort? I'm trying to understand RLS and I'm confused!!!

> Please respond.

>

>

>

> ------------------------------------------------------------------------

> Give back to your community through " Grow to Give. "

> http://www.onelist.com

> Deadline is June 19. See homepage for details.

> ------------------------------------------------------------------------

> This forum is for support only. The information posted to this List is for

> support purposes

> and is not intended to replace the examination, diagnosis and treatment of

> a licensed

> physician and no such claims are inferred.

>

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  • 10 months later...
Guest guest

You did a great job explaining your situation and your situation sounds just

about like everyone else in this group. Good luck in sdale. The Mayo

clinic there has a GREAT reputation. I used to live out there.

a

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(no subject)

> My name is I live in Ponca City Okla.I was told when

>I was 30 after being injured in a work accident I had Polyneuritous

>.Because when given an EM test my lack of nerve activity they told me

>I'd be in a wheelchair in a year. They had no name for it just said they

>thought it was inherited . My mother had allot of leg pain and cramps. I

>have had carpal tunnel surgery on both hands. In 1994 we got a new

>neaurogilest in town he finally gave my problem a name CMT I don't know

>what kind I have never had the blood test.I stepped out of the car

>8-12-99 & my left foot felt like all heck broke loose found a orthopedic

>who did an ultrasound & said I had a rupture tendon I'm starting to get

>the claw toes on left foot don't know if this is because of my feet

>starting to deform or what I have the very high arches he said there

>would have to be a tendon taken out of the back of me leg & put in my

>arch.He could not do it & had no experience with CMT . I'm going to

>sdale Az. next week to my daughters & I have a apt. with a foot &

>ankle Dr. at Mayo Clinic. No doctors in my area know anything about CMT.

>My neouroglist has only had one other case. My daughter in AZ. has it

>also they discovered it when they gave her an EMG for carpal tunnel..I

>am now 53 I have extreme weakens in hands,pain in calves of legs,bad leg

>cramps and I'm not at all good at explain all of.this. Thank you so much

>Gretchen for inviting me to this group I've learned so much.

>

how far are you from Springfield Missouri? I live south of there

and my neurologist is in Springfield and is associated with MDA. He knows a

lot about CMT.. That would be a lot closer than Az! >Becky M.

>

>

>

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I've recently started to feel numbness on my big toe on my right foot. This

is also the foot that I am having surgery on (tendon transfer) in the next

two weeks because I am walking on the outside of my foot. I am wondering if

this could cause the numbness in the toe (walking on the outside of my

foot)? What I think also could be a possibility is that because the toe is

curling a bit it is rubbing the top of the toe and irritating it, causing it

to feel numb/tingly. Or, possibly it is the nerves inside the toe that are

causing it to feel numb/tingly. It is worse at the end of a work day, and

when I am driving home and have my foot on the accelerator the

tingly/numbness feeling drives me crazy. I do however notice that it feels

this way in the a.m., although not as bad at first. I sometimes even feel

it when I wake up in the middle of the night, sometimes I think this is what

wakes me up. Does anyone else experience the same/or similar thing? I'm

really beginning to think that it is the curling of the toe and the constant

rubbing that could be causing this feeling. Would like to hear from anyone

that does experience this. Thanks so much.

Terry Little

littlet@...

Re: (no subject)

You did a great job explaining your situation and your situation sounds just

about like everyone else in this group. Good luck in sdale. The Mayo

clinic there has a GREAT reputation. I used to live out there.

a

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Could you tell me more about your surgery? Where is tendon coming from &

where is it going? I have a ruptured tendon in my left foot in arch & I have the

same trouble with my toe.

Thank you.

" Little, Terry (CSR) " wrote:

> I've recently started to feel numbness on my big toe on my right foot. This

> is also the foot that I am having surgery on (tendon transfer) in the next

> two weeks because I am walking on the outside of my foot. I am wondering if

> this could cause the numbness in the toe (walking on the outside of my

> foot)? What I think also could be a possibility is that because the toe is

> curling a bit it is rubbing the top of the toe and irritating it, causing it

> to feel numb/tingly. Or, possibly it is the nerves inside the toe that are

> causing it to feel numb/tingly. It is worse at the end of a work day, and

> when I am driving home and have my foot on the accelerator the

> tingly/numbness feeling drives me crazy. I do however notice that it feels

> this way in the a.m., although not as bad at first. I sometimes even feel

> it when I wake up in the middle of the night, sometimes I think this is what

> wakes me up. Does anyone else experience the same/or similar thing? I'm

> really beginning to think that it is the curling of the toe and the constant

> rubbing that could be causing this feeling. Would like to hear from anyone

> that does experience this. Thanks so much.

>

> Terry Little

> littlet@...

>

> Re: (no subject)

>

> You did a great job explaining your situation and your situation sounds just

>

> about like everyone else in this group. Good luck in sdale. The Mayo

> clinic there has a GREAT reputation. I used to live out there.

> a

>

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> 1.6 Million Digital Images!

> Download one Today from Corbis.com

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  • 1 month later...
Guest guest

In a message dated 5/26/2000 7:21:38 PM Pacific Daylight Time,

JJSLP122@... writes:

<< I am just now learning about CMT as my new husband (of 6 months) has it.

The

doctor described it " on a scale of 1-10, he has a 10 " . We are looking into

surgery, but I would like to talk with people in Texas, specifically West

Texas.

Thanks,

Jennife >>

Hi , What does your husband use to get around?

jenny

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:

Hi, I'm in Garland, TX, a suburb of Dallas. Donna

(no subject)

>I am just now learning about CMT as my new husband (of 6 months) has it.

The

>doctor described it " on a scale of 1-10, he has a 10 " . We are looking into

>surgery, but I would like to talk with people in Texas, specifically West

>Texas.

>Thanks,

>

>

>

>

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  • 12 years later...

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