Want to introduce myself

Whether new to RLS 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.
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atule1969
Posts: 4
Joined: Thu Jun 04, 2015 11:19 am

Want to introduce myself

Post by atule1969 »

Hello everyone. I am suffering from RLS and so glad to have found this foundation and site. I am a 67 year old male and have suffered from this terrible ailment for 30 years. I have sought medical treatment over the years and get no compassion from those who do not understand what it means to have restless legs. I have been prescribed mirapex, requip and their generic replacements. They have worked , somewhat, but now my symptoms have progressed to almost a 24 hour problem, not just at night. I am at a point where I dread everything about life and looking for something to help. My wife has been reading the blogs on the internet, and now I know she has a better understanding of what I am experiencing.
From this site I hope to arm myself with information to present to my doctor. I am receiving my care from a VA doc and he has no clue about this syndrome. In the meantime, I hope to learn from fellow sufferers a way to cope.

Rustsmith
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Posts: 4823
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Want to introduce myself

Post by Rustsmith »

Welcome atule1969. Since you have been taking the mirapex/requip class of drugs, which are classed as dopamine agonists (DA), there is a good chance that you are experiencing the phenomenon of augmentation. This is a reaction to the drugs that only happens with the dopamine drugs. Augmentation is where the drug that was intended to treat your RLS/WED actually starts to make things worse. Increasing the dose helps for a while, but eventually the problem returns. So there is an excellent chance that your VA physician has never encountered augmentation and has no idea how to proceed.

Take a look at the information in the link in my signature to get an idea of whether or not you believe that you are experiencing augmentation. You might also find a note from badnights and check the links in her signature as well.

If you and your doctor decide that this is the problem, then you probably need to get off of DAs altogether since have have already been through several of them. As you will see from various comments on this board, this is not easy and is not something that you will be able to do without the help of an understanding doctor who is willing to provide you with some form of opiate for the withdrawal period.

So, a couple of suggestions are:
1. Get a copy of the book "Clinical Management of Restless Legs Syndrome", read it cover to cover, mark important sections and then share it with your doctor. The book is available on Amazon.
2. If your doctor needs more convincing, you could consider emailing Dr. Mark Buchfuhrer (one of the authors of the book). There is a Southern California RLS Support Group and amazingly, he answers questions that are sent to him. He has even be willing to contact other doctors directly in difficult situations.
3. Finally, depending where you are located, you could consider going to one of the RLS/WED specialists. There are not many, so this is not something that everyone can afford to do.
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.

Polar Bear
Moderator
Posts: 7920
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Want to introduce myself

Post by Polar Bear »

Have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Want to introduce myself

Post by ViewsAskew »

Welcome. Great advice so far. Let us know if you have any questions.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Tlgreg60
Posts: 4
Joined: Sat May 09, 2015 3:16 pm

Re: Want to introduce myself

Post by Tlgreg60 »

Yes my ferritin level us 48. They said its normal

Polar Bear
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Posts: 7920
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Want to introduce myself

Post by Polar Bear »

A ferritin level of 48 is generally considered normal.
However...... it is not sufficient for someone suffering from RLS/WED. Especially if they are using a DA medication such as Mirapex or Requip.
Your ferritin needs to be up around 100. You might consider an iron supplement to boost your levels.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

atule1969
Posts: 4
Joined: Thu Jun 04, 2015 11:19 am

Re: Want to introduce myself

Post by atule1969 »

I just received the results of my blood test for ferritin. It is exactly at 100 ng/ml. I had another severe night last night and suffering. I hope to get to see a "sleep medicine doctor next week.

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