First Doc apt 2morow

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KJOYCE0003
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Re: First Doc apt 2morow

Post by KJOYCE0003 »

I am really worried that it may make my RLS worse from what I have read on this site, the last thing I want is to make it worse. I wonder why he did that as well I didn't even know that he should started at a lower dose. I am just very apprehensive about taking it.

Polar Bear
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Re: First Doc apt 2morow

Post by Polar Bear »

Do you know what your ferritin level is?

An ordinary blood test may show your iron levels as ok but it is your serum ferritin levels that need to be checked. Doctors often reckon that a ferritin level of 20 is normal but for us rls/wed sufferers it should be up towards 100. This test is not done as a matter of course when having bloods done and you should specifically ask that your ferritin is checked. Ferritin levels tell us what iron is stored in our brain, rather than the iron that is flowing in our blood.

A good ferritin level helps to prevent the risk of augmentation (making it worse) which is possible when taking a Dopamine Agonist drug such as Requip.
See the links in badnights signature.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

KJOYCE0003
Posts: 20
Joined: Mon Mar 18, 2013 5:41 pm
Location: VIRGINIA

Re: First Doc apt 2morow

Post by KJOYCE0003 »

You know I really don't know I will have to ask him on my next appointment. My question is what if all of these "dopamine meds end up not working" What is the next step because I'm really tired!!!!!! I hate to be a baby but I really want to have a tantrum right now : (

ViewsAskew
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Re: First Doc apt 2morow

Post by ViewsAskew »

KJOYCE0003 wrote:You know I really don't know I will have to ask him on my next appointment. My question is what if all of these "dopamine meds end up not working" What is the next step because I'm really tired!!!!!! I hate to be a baby but I really want to have a tantrum right now : (


If they don't work, you try the next things - there are lots of options.

So, first thing that should happen is:
Hemoglobin test (you'd had that, you're anemic)
Ferritin test (do not take dopamine drugs until you know the results)

Once you get the results, you can make decisions. There may be a cause of the anemia. Anemia is associated with celiac, for example, and 30% of people with celiac have WED. If it's very low (like in the 7-8 range), you may need an infusion.

In the meantime, since you shouldn't take a dopaminergic, you can ask to take a low-potency opioid since the clonazepam isn't working. Tramadol might help, for example.

The key, I think is a good dialog with the doctor about what's important to you and how you handle the sticky issues of not being able to use a dopamine drug until the ferritin is high or how to handle side effects and still ensure you have quality of life.
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.

badnights
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Re: First Doc apt 2morow

Post by badnights »

first of all, don't obsess about "what if the meds don't work" because maybe they will and maybe they won't. Planning for the possibility is a reasonable thing to do if you have the time, but don't spend a single moment worrying about it, because it may never happen.

Feel free to take LESS ropinirole/Requip than he prescribed. If your ferritin is less than 100 ng/ml, you should stay on as low a dose as possible until you can raise it to 75 or 100. That may happen when he treats for the anemia - what did he suggest for that?

Plesae realize that even though he may be a kind, helpful and caring doctor who knows a bit about WED/RLS, he may nevertheless know nothing about augmentation; in addition, he may not understand the impact this disease has on your quality of life. If he's a good guy, he will listen. You never have to fear acting like a know-it-all, because you respect the fact that his experience and training equips him to understand, evaluate, and make use of any information you find. So you can bring him something, tell him you came across it in your hunt for more information, and ask him what he thinks of it.

I have a long post near the bottom of the first page of this thread, listing 5 references to the need for higher ferritin levels in WED patients, and the possible consequence of augmentation if levels are low:
viewtopic.php?f=4&t=8058
It might be helpful to copy that one post and print it out, so your doctor can look up those references if he wants.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jakesmom
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Re: First Doc apt 2morow

Post by jakesmom »

While I have never had a ferritin level test, I can weigh in on the drug issue..... To take or not to take.....

I had many good years of controlled symptoms while on Reqiup and Mirapex. Your decision to take medication is your own. It's a quality of life issue. Are you happier living in pain or dealing with potential side effects.

Speaking only for myself, despite the issues I am having, if I could go back in time, I would still take the medication. I would, however, have been more vocal when it came do dosing concerns. I began treatment over 10 years ago and doctors didnt know much (some still dont) about WED. Now, with sites like this, and moderators who know so much from personal experience and extensive research, I can get opinions on symptoms or medications. Some of these guys see the best doctors in the country and share what they learn.

Ok, I didn't sleep well last night and I am rambling. Yes, the medications have risks and side effects but the relief they can provide is well worth it. If you decide to take the Requip, watch for changes to your body and your personality, don't ignore them, address them. There are many medications out there some may not be for you, but once you find one that works for you, and you will, you will be glad you spoke up.

KJOYCE0003
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Location: VIRGINIA

Re: First Doc apt 2morow

Post by KJOYCE0003 »

Ann-

I havn't asked what my Ferritin levels are but my blood was at a 9. He put me on IRON pills and Vit. C & D. I don't think I have the nerve to ask for an
opioid. I know they would work because I had a Leep procedure done in Jan, and the doctor gave me vicodon 10mg and I sleep like a baby. No leg crawling nothing. It was like heaven. I just don't want him to think anything crazy because after reading up on it in many situations when we bring up the O word the Doctor starts treating many of us like criminals. Its so sad. I don't have a long term relationship with the Doc yet to trust me.I will for sure think of a good dialog with the doctor about what's important to me. -ANN- and really everyone I want to say thank you so very much for your support and I will take some print outs of the materials you have provided me. You have all been a great great HELP!!!!!!!!!

Polar Bear
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Re: First Doc apt 2morow

Post by Polar Bear »

I had been on Requip/ropinerole for some time and although it helped it didn't work on its own. I had a 9 hour flight planned and knew that something had to be done so I asked dr straight out, may I have some codeine to help me deal with symptoms during a 9 hour air flight. He gave me 'the chat' about opiod etc and I agreed with him, but I still wanted help. He gave me a limited number of cocodamol 15mg with warnings about dependency. What a difference they made, flight was excellent. Gradually he agreed that I was responsible and he prescribed 15mg cocodamol on a sort of regular pattern. Then I had a very painful neck and shoulder and was prescribed 30/500 cocodamol. My shoulder is now pretty good but I still pick up my script. I use them for my WED symptoms and I bet my doc doesn't even recall why I was prescribed them. As far as I'm concerned they are part of my WED treatment and I am careful to only take one cocodamol pill at a time.

My point is that very slowly I ended up getting what I needed.
An old saying...... slowly slowly catchee monkey :)

Good luck with your doctor appointment.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

KJOYCE0003
Posts: 20
Joined: Mon Mar 18, 2013 5:41 pm
Location: VIRGINIA

Re: First Doc apt 2morow

Post by KJOYCE0003 »

I think you are right I need to give it some time with my doc. I have only known him for a month and he has already given me Gabapentin, Requip, clonazepam, which of none of them have worked as of yet but I will give it some more time. I really want to have some help but I think my Doc is really trying to get me there.

Polar Bear
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Re: First Doc apt 2morow

Post by Polar Bear »

A cooperative dr is your best friend. A GP who is willing to learn is worth a great deal more than a '''specialist''' who only thinks he knows what he is talking about !!
Always take your information with you and have in mind what you can cover in 5 or 10 minutes, so you need to prioritize.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

KJOYCE0003
Posts: 20
Joined: Mon Mar 18, 2013 5:41 pm
Location: VIRGINIA

Re: First Doc apt 2morow

Post by KJOYCE0003 »

I do have a question why didn't the Requil work on its own. I was told by my doc to stop all the other stuff he gave me and to try just the one 'Requil' for a few weeks and I just wanted to know what other issues were you dealling with along with just the Requil!

Polar Bear
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Re: First Doc apt 2morow

Post by Polar Bear »

We are all different and what works for one doesn't necessarily work for another. Don't know why requip didn't work on its own. I have severe WED 24/7. And eventually discovered what worked for me but it took time. I also have arthritis, fibromyalgia, giant cell arthritis (in remission) and insomnia.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Re: First Doc apt 2morow

Post by ViewsAskew »

KJOYCE0003 wrote:I do have a question why didn't the Requil work on its own. I was told by my doc to stop all the other stuff he gave me and to try just the one 'Requil' for a few weeks and I just wanted to know what other issues were you dealling with along with just the Requil!


Sorry for all the questions, but hopefully this will give us some info to help.

How much Requip did he have you take (mg)?

What time did you take it?

When do your symptoms start?

Was there any impact at all?

Do you know your ferritin level? (sorry - you probably said, but I forgot to look before I started typing)
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.

KJOYCE0003
Posts: 20
Joined: Mon Mar 18, 2013 5:41 pm
Location: VIRGINIA

Re: First Doc apt 2morow

Post by KJOYCE0003 »

-ANN-

I'm going to give some background first. I have had RLS since I was a child, I was told like many of us that it was growing pains. Then as I got older I talked about it with my family more, and they told me that not only does my Grandmother have the same symptoms, but my Mother as well.. This was something I knew was a real issue even though my family said I could just push threw, and I can handle it on my own. Well, as we know it is bigger than anyone without a sever case could ever understand. I tried for many years to just deal. It seemed to get worse ( if that is possible ) or maybe I just got fed up! I had a LEEP procedure done in Jan. and had major complication. I was hemorrhaging really bad, went to the ER 3 times ,. The Doctors couldn't get it to stop. On the 3rd visit they finally got it to stop, after I passed out in the hospital. They had to give me that nasty smelly stuff : ) lol to get me back.

Anyway long story short they had to end up admitting me because I had a blood count of 8. They just wanted to watch me because I was so anemic. I was discharged the next morning THANK GOD I have never had a medical anything so it was overwhelming.....So..... after all that the RLS got really bad along with the fact that at my new job I sit ALL day and talk on the phone so that already made things out of control.

I went to the doctor back in Feb?.... I think was my first appointment with my new Family Doc and he did do blood work on me. My blood count was still at a 9 and he was very worried about that. He knows it has amplified the RLS but he also knows that it is not the main cause of it.

-He didn't do a ferritin level test so I will get that next visit!!!

-We started with taking clonazepam 0.5 mg and that is ok but it just makes me tired does nothing for my RLS, gabapentin 600 mg that doesn't work,and I don't like the way i feel with it. I also feel tired in the am no matter how early in the evening I take it. I am just now starting the requip 0.5 mg.

-I take the Requip in the evening around 9:00 when I get off work. My symptoms start usually within 10 min of getting in the bed and I know my anxiety about it happening doesn't help. I do think the Requip is helping I have had a few good nights since I started it but I still take the clonazepam 0.5 even though the Doc said to just try the Requip on its own for the first couple weeks but I still would wake up in the morning around 3:00 am.

I am also going to a physical therapist this Wednesday because he did some x-rays on my lower back and I have more damage than I should at my age( 29 is my age by the way ) so he thinks that maybe when I sleep or sit that the nerves get agitated. So I will give the feed back after that as well.

I had said before, that during the time of my LEEP procedures I was given vicodon 10mg and I slept like a baby. I wounder if after my Physical Therapy, if I should tell him how great that worked. I just don't know. I can handle pain really well I even did my last surgery with nothing at all and my OBGYN said I was a trooper. She said the pain was comparable to labor and I just pushed threw it so I wouldn't have to go under again, that worried me more then the pain aspect. If it will really help I will at some point ask him about it though. That is if nothing else works. I have read so many great stories about how well it works in combo with other meds. I know the biggest issue is ADDICTION or whatever but if you use it for the actual purpose than how can you get addicted. Anyway most of the people take it at night to sleep so how can you even feel anything. I took mine in the hopital right before bed and just SLEPT. That would be the only thing I could see you getting addicted to SLEEP LOL. Anyway just saying : )

I AM TOTALLY UP FOR ANY INPUT AND THANKS AGAIN FOR BEING THERE AND LETTING ME GO ON AND ON. YOU HAVE ALL HELPED ME SO VERY MUCH IN THIS PROCESS.

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