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Restless Leg Syndrome
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alliej0225 posted:
Can anyone please help me with RLS. I am taking the maximum dosage of 2 mg of Mirapex. Or, at least, I have been told that's the maximum you can take of it. Now I am going to a neurologist. What can he or she do? Are there any medications that I can try. I have tried Requip but it didn't work. I have the RLS all the time. We can't even travel to town without having to stop and let me get out and walk. And town is 12 miles away. And give anyone give me some questions that I can ask this doctor? I have to go Monday and I really need to know what questions that I can ask that will give me some answers. I know that I have some myself. But maybe someone here can direct me to more that I need to ask. Any help would be deeply appreciated.

Thank you,

Sherry
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Byroney_WebMD_Staff responded:
Dear Alliej0225,

I'm sorry you're having so much trouble with RLS. I sure hope the doctor on Monday has some solutions for you to try.

I have three articles that may help:

Restless Leg Syndrome (RLS)

Treatment for RLS

Periodic Limb Movement Disorder (PLMD)

Let us know how the doctor visit goes!

Byroney
 
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alliej0225 replied to Byroney_WebMD_Staff's response:
I went to see the neurologist Monday and he started me on some Mirapex ER. I am starting with the .3875 Mirapex ER. Was told to start on the low dose and go up to twice the strength next monday, if this one doesn't help that is. Well, still walking all the time. I know I need the exercise but this sure is rough. I wake up all hours of the night and get up and walk. And I have a dream that my purchase of the Mirapex ER is my downfall. And I didn't know that they have a gym at work. lol I try to keep busy during the day especially when my legs ae hurting. I walk and walk during those times. The doctor said if this didn't work he would get a complete blood work. This could be caused by several things. Like thyroid, B12, too much iron,not enough iron
someone poisioning me I guessed that, but I don't think that is true. So, if you could help me, I would greatly appreciately any help.
 
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alliej0225 responded:
Since I went to see Dr. things have not gotten any better. I am walking the floor all night and all day. I try to stay busy just so my legs won't have the sensation or hurt. I have a call into my doctor but have not gotten any response yet. I am tired and don't know what to do. I've tried researching on the internet but haven't had very much luck in finding material that is relavant to me. If anyone knows anything else I can do, please tell me. I am at my wits end from going without sleep. Thanks so much for listening.


Sherry
 
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Byroney_WebMD_Staff replied to alliej0225's response:
Dear Sherry (alliej0225),

I'm sorry to hear that the medication hasn't been helpful. Did you go ahead and increase the dosage like your doctor suggested?

Do not be shy about calling the doctor's office back until you get a response. There's no need to suffer silently and wait--it's okay to advocate for yourself.

Didn't he mention doing a bunch of blood work if the medication didn't work? Maybe you should just make a follow-up appointment? Maybe if this doctor isn't very responsive, you'll need to consider a second opinion.

Keep us updated on how you're doing,

Byroney
 
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alliej0225 replied to Byroney_WebMD_Staff's response:
I finally got a call from the nurse. My dosage of the mirapex goes up today to 1.75 of the mirapex er and I am still taking the 2 mg at night. She told me if I stilll was having the trouble after tonight to call her back in the morning. I am optimistic that this will work. Or rather, I am hoping this will work. Dr. doctor has suggested lab work and I do have a follow up appointment on November 22. It has gotten to the point that I can't even ride to town which is 12 miles away without having to stop and walk. And I can forget going to the er if my legs get to hurting really bad at night. I have been told by the er doctor that there wasn't anything that he could do. I woudl just have to walk the floor and that was the night that my mirapex had completely quit working. I can understand why someone would go crazy with this. It is enough to drive you crazy. I am trying to be patience with this but somethings I think that I am reaching a breaking point. When I know moe then maybe I can get some relief. Thanks for listening.
 
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alliej0225 replied to Byroney_WebMD_Staff's response:
I do have some more questions and I wonder if this goes along with the rls. When I sit during the day, I have noticed that if I sit for more than 5 minutes my arms, legs and just about whole body will jump....or jerk. Is this something that goes along with the rls? And will this continue if it is? It is hard to try and relax at all when something like this happens. My husband asks why I am so jumpy and I'm not really "jumpy" or nervous as he thinks. It's just my body does that. And if I ever get to sleep for a minute during the day, it will do that also. Can you tell me what this is? Again, thanks for listening.

Sherry
 
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Byroney_WebMD_Staff replied to alliej0225's response:
Dear Sherry (alliej0225),

I'm so glad the doctor's office called back, and that you have an appointment coming up on the 22nd. Hopefully the increase in the medication will help you with the night-time issues you've been having.

I'm sorry, I'm not a doctor and don't know the answer to your "jumpy" question. I do know the article on RLS I linked you to says, "Restless legs syndrome makes you feel like you must move your legs. These feelings are often described as tingling, "pins and needles," prickling, pulling, or crawling." I'd definitely ask your doctor, because it's a good question.

Let us know how you're doing,

Byroney
 
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Rex77 replied to alliej0225's response:
I have had RSL for a long time but accidently found that I can generally control them with Vit B12 shots and 2 mg of Abilify. Abilify seems to work for me although it is not intended for RSL. I am pretty sure it works becz have tried going off Abilify 2 mg (a Very lose dose) and my RSL comes back.

The problem with Abilify is that it is very expensive and their is no generic equilivant until around 1015. But to be spared the symptoms of RSL, I'll pay the $150.00 a month co-pay.

I am extremely alergic to Miraplex and all the other traditional RLS drugs.

Good Luck
 
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Joy3Cal responded:
Hi Sherry! I am a fellow RLS sufferer and have, by trial and error, found out that magnesium supplements help, as well as vigorous exercise that involves the legs (such as brisk walking up hills or brisk bicycle riding up hills or on stationary bike). Drinking plenty of water every day is a must (for me, anyway). And, the biggie is iron levels in my blood. Be sure to have your Dr check your IRON and Ferritin levels, not just your CBC. They've discovered I am low on iron, but CBC is normal (normal hematocrit and hemoglobin). Since taking the herbal iron supplements I have been getting the best sleep I have had in years--that is the only change in my diet/routine. Be sure to not take iron unless Doc says you are low, as it can be very toxic.

Best wishes, and do let us know how you are getting on.
 
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rebbar responded:
I can certainly empathize since I have the same problem. I have tried numerous medications, including Requip. My neurologist finally put me on Mirapex (0.25 mg) at selected times of the day: 1 tablet at 4:00 p.m., 1 tablet at 7:00 p.m., and 2 tablets before I go to bed. I also take 1 tablet every 3-4 hours when traveling. I have been given to understand that as we get older, the RLS increases and will begin earlier in the day. I have certainly found this to be true. My doctor has told me that he will increase the number of pills I take if I need to begin them earlier in the day.Sticking to the regimen of taking the pills regularly is the only relief I have found. If I forget to take my pills early in the day, I pay by not being able to sleep later. Please let me know what your new doctor has to say.
 
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SharonRT responded:
I suffered with RLS for years. Tried 3 different mattresses and finally sprung for the Temper-Pedic. What a huge difference. Cut the RLS by 90%!! ( I got a pillowtop, but don't think you need one. They have an in home trial for like 90 days, so you are not stuck with it if it doesn't work for you.) I found great relief if I got up and stretched my legs by leaning over the bed (or car) and stretching my calf muscles to the max. A friend of mine took meds and fell asleep during the day. Not good if you can avoid them. Hope this helps you.
 
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mch1960 replied to SharonRT's response:
My family has restless legs too (my mother, and both sisters). My mother takes different medications (and unfortunately I don't know what they are), but in all truthfulness, nothing really makes it go away completely for her. She does take an OTC called Cramp Free and that helps in between the prescription doses. I have found that as long as I avoid caffeine after noon and take my Ambien before bed, I do pretty good. During the day (such as in movies or on an airplane), I can usually control mine by taking ibuprofen. Also, maybe you should research food causes since your RLS is so severe. My sister who is now on a gluten-free diet has discovered that her restless legs symptoms have decreased considerably. Hope you get some relief soon.
 
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golf1234 responded:
Try a low dose of an iron supplement. Works for me and others I know why have RLS.
 
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2sofi responded:
Klonopin 0.5 mg at bedtime works for me!!!!

Also, I try very hard to avoid preservatives in foods. Sometimes when the Klonopin does not work, I can think back to ingesting preservatives during the day. Good luck!!


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