JANUARY 2018 - NEW MEMEBERS

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to laurab0107

Postby Rustsmith » Mon Jan 15, 2018 4:21 pm

Monday, January 15

Welcome to

laurab0107, whose sleep deprivation has affected her well being physically, mentally & emotionally. She is hoping that with the information that she has obtained in this site may be able to help her.

Please post a note telling us a bit about what you are currently doing to manage your RLS and asking any questions that you have. We would love to be able to help.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to capot1948

Postby Rustsmith » Tue Jan 16, 2018 4:48 pm

Tuesday, January 16

Welcome to

capot1948, who has been having 'abnormal involuntary movement' problems for almost a year now. capot1948 has been to various movement disorder specialists who have said things like possible orthostatic tremor, orthostatic myoclonus and the latest from the Baylor College of Medicine who said atypical restless leg syndrome. capot1948's understanding of RLS is that it only happens at night when laying down which is not the case. Therefore capot1948 is again searching for answers to what exactly the problem is.

Although RLS issues often occur mostly at night, they can also cause problems during the day. This is especially true when attempting to relax. If you will post a note telling us some more and what you have tried to address the problem. Maybe we can offer some comments. Also, since you appear to be near the Houston area, you might try to get an appointment with Dr William Ondo at Methodist Hospital. He is a movement disorder specialist and one of the leading researchers in the area of RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to sheila2259

Postby Rustsmith » Tue Jan 16, 2018 6:05 pm

Tuesday, January 16

Welcome to

shiela2259, who has RLS 24/7/365, suffers from augmentation and sees no real relief in sight. Her doctor says he is between a rock and a hard place in treating her. She need some real help.

Please post a note telling us what you have tried to treat your RLS and whether your doctor can prescribe opioid medications. There are always things to try, if your doctor is truly willing to help.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to i-o-u

Postby Rustsmith » Tue Jan 16, 2018 11:43 pm

Tuesday, January 16

Welcome to

i-o-u, who has symptoms day in & day out- with the worst being from 5:30pm-2am. i-o-u has tried to stay off the meds, having come off many meds needed for treatment of Chronic Lyme Disease & it’s symptoms but has traded one loaded bag for another. So, is wondering, i-o-u has had RLS for many years prior but just masked the other meds.

After you have a chance to look through the discussion "A good place to start" at the top of this forum, please post a note telling us a bit about your symptoms as well as those past meds so that we can offer some informed suggestions.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Brisbaneite

Postby Rustsmith » Wed Jan 17, 2018 3:31 am

Tuesday, January 16

Welcome to

Brisbaneite, who is a long time sufferer of RLS as was Brisbaneite's mother. This condition severely affects the ability to have a good night's sleep and leads to inability to get out of bed early, daytime drowsiness and lethargy.

Please post a note telling us a bit about what you are currently doing to manage your RLS and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Lilmo

Postby Rustsmith » Wed Jan 17, 2018 5:16 pm

Wednesday, January 17

Welcome to

Lilmo, who wants to talk with others in same state as she just to know she is not the only one suffering. When it starts, she get so restless and stressed out trying to deal with it. Last night she didn't get to bed at all because she couldn't settle it.

Please post a note telling us what you are currently doing to manage your RLS. We would love to be able to discuss RLS with you.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to LillianPhilbin

Postby Rustsmith » Wed Jan 17, 2018 11:53 pm

Wednesday, January 17

Welcome to

LillinaPhilbin, who RLS makes her unable to get a full nights sleep - she keeps tossing and turning. So it affects her relationship with her partner at night and upon awakening.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have. We would love to be able to make some suggestions for you to consider.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Brin1861

Postby Rustsmith » Fri Jan 19, 2018 2:07 pm

Friday, January 19

Welcome to

Brin1861, who says Omgosh, there's actually a foundation for restless legs! She has suffered with restless legs for over 30 years, at first her doctor said she must be laying on them wrong...there is no help. She takes 1 mg Mirapex which helped in the beginning if she took it before any symptoms started but now her legs are constantly jumping morning , noon and nigh...it happens in her arms as well.

With 1mg of pramipexole and the symptoms in your arms, you are almost definitely experiencing augmentation with the pramipexole. Take a look at the notes in the Augmentation forum to get an idea of what it is and what you and your doctor need to do to resolve this problem. And please post a note telling us a bit more so that we can offer you some specific suggestions.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to rjdishon

Postby Rustsmith » Fri Jan 19, 2018 4:58 pm

Friday, January 19

Welcome to

rjdishon, who is currently take 4 mg of Klonopin and 4 mg of Requip per evening to be able to sleep; however, rjdishon suffers from RLS symptoms throughout the day. rjdishon has a computer lifter to use for approx. the last 4 hours of the workday because of an inability to sit.

Please take a look at our forum on Augmentation since it sounds like you may be experiencing it. And please post a note with any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to longear1

Postby Rustsmith » Tue Jan 23, 2018 1:19 am

Monday, January 22

Welcome to

longear1, whose RLS has about ruined her life. She has had it since about age 3 and since menopause it's worse.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Avtar Singh

Postby Rustsmith » Tue Jan 23, 2018 2:00 pm

Tuesday, January 23

Welcome to

Avtar Singh, who is 67 Yrs and not getting sleep due to RLS. After meals jos RLS is more severe. He is experiencing rapid loss of memory. He had a spine injury (D9 & D10 joint) 20 yrs back. and is an ex-sportsman(Cyclist) who needs help to pull him out of his present situation.

Please post a note telling us if you are taking any medications for your RLS and the dose. We would love to offer you some suggestions to discuss with your doctor.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Wecome to toubadoct

Postby Rustsmith » Tue Jan 23, 2018 4:19 pm

Tuesday, January 23

Welcome to

toubadoct, who has tried any number of meds for RLS but opioids work best without nasty side-effects. Trouble is that docs are afraid to prescribe them...but you all know that already. And toubadoct is a doctor!

Please take a look at the Foundation's website (www.rls.org) to look at the info on opioid advocacy and the opioid registry at MassGeneral (under clinical trials). You will also be interested in the latest to publications described in the General Topics forum's Published Research thread. And please post a note telling us a bit more about yourself.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to seanh

Postby Rustsmith » Wed Jan 24, 2018 1:30 am

Tuesday, January 23

Welcome to

seanh, who suffers from by RLS, by having trouble sleeping and shaking his legs. seanh recently started to take medication and is looking for remedies.

After you get a chance to look around, please post a note telling us about your medication and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to JoLyn

Postby Rustsmith » Wed Jan 24, 2018 10:46 pm

Wednesday, January 24

Welcome to

JoLyn, whose RLS is devastating. She gets very little sleep and it is wearing her down every day.

Please post a note telling us what you are doing to manage your RLS so that we can make some suggestions for you to consider.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 3349
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to gingerf21

Postby Rustsmith » Fri Jan 26, 2018 3:05 pm

Friday, January 26

Welcome to

gingerf21, whose RLS seems to be getting worse with age. gingerf21 would like to network with other RLS sufferers to see what their experiences are, what has worked for them, and to not be alone with this problem.

You have definitely come to the right place to network with other RLS patients. Please post a note telling us what you do to manage your RLS and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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