No WED/RLS Talk Here!

Anything on your mind that isn't about WED/RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
EeFall
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No WED/RLS Talk Here!

Postby EeFall » Wed Mar 27, 2013 3:05 am

Gee, I almost feel left out. I have been sleeping for weeks now. I am starting to get back to my old self. I worked overtime the other day at work. I have been working out in the yard. I take naps. I went to a movie. I went out to eat several times in the past week. I keep taking my meds and they keep working every day. I don't know if it was the double shot of iron infusions or if I am in a kind of remission, or maybe it is the brownies I have been eating, don't know for sure but believe me I pray it continues.

I had a little stumble last week, but then I figured out what to do with my meds to keep it going. I haven't even been complaining about the drugged up feeling. Last week I was ill for several days with an intestinal flu but still managed to go outside and work. I actually swept a 150 foot long street with a shop broom, the entire width. We live in a manufactured home community and our place is new. I finally realized that the city doesn't bring their street sweeping equipment into the community so I decided to do it myself. Normally (as in the last 13 years of RLS hell) I wouldn't have been able to do that well, much less sick!

:lol: :D :) :mrgreen: It is possible to feel good once again! Many of you on here know I have had severe RLS/WED, the doctor even gave up on me. I was thinking about suicide like several times every hour, it was terrible! I don't know how long this is going to last, but I'm going to ride the wave all the way to the shore. I'm going to enjoy every second of this, every second! Wonder if I would have given up in year one of this? Year 3 or 4? Year 13? A few months ago, maybe not even that long ago, I was on here and I was just about at the end...I thought I can't take this anymore!

It has been 13 years of almost a constant hell, with a day here and there every few months that might be considered a good day. I am so glad that I didn't give up. Don't give up! To think of the several years when I had severe WED and the meds wouldn't work, I stayed up mostly 24 hours a day for years, I'd pass out from exhaustion and then start pacing again all night long. I am so grateful for the last few weeks. I went to church for the first time in probably 10 years the other day to see my 2 granddaughters be baptized, they were so cute, I lived to see my grandchildren, just think what I would have missed if I would have given up. Don't give up!

ViewsAskew
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Re: No WED/RLS Talk Here!

Postby ViewsAskew » Wed Mar 27, 2013 5:38 am

Thanks for this, EeFall. It's much needed to hear.
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.

cornelia

Re: No WED/RLS Talk Here!

Postby cornelia » Wed Mar 27, 2013 11:34 am

I am very pleased to read a success story like this. Gosh, isn't that wonderful? It may be that you are one of the lucky ones who do well on iron infusions.
In that case you know that when RLS gets worse again a 'simple' infusion will do the trick.

Corrie

debbluebird
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Re: No WED/RLS Talk Here!

Postby debbluebird » Wed Mar 27, 2013 3:28 pm

I'm so glad you are doing well. At some point you might have to get another iron infusion.

Polar Bear
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Re: No WED/RLS Talk Here!

Postby Polar Bear » Wed Mar 27, 2013 4:08 pm

Eefall.... I am so happy for you.
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

EeFall
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Location: USA

Re: No WED/RLS Talk Here!

Postby EeFall » Thu Mar 28, 2013 3:59 am

Thanks for all your replies, the sleep continues! I don't know if it is the iron infusions. They had tried it on me like around November, 2012 but 1/2 dose. It seemed to work a few days then it didn't - when the doctor checked my ferritin levels a few months after that they were actually lower than when he had given me the infusion which even puzzled the doctor. He said this double round was the most they give anyone and should last for years, as in at least 3 years. I think what I need to do is have one of my doctors do a ferritin test now and see just what level it is. I swear half the doctors I go to have less sense than I do. They need to establish a baseline so they can say, "Hey it looks like at this level in his blood stream it appears to help." Then they could do another test in a couple of months and see where it is.

I have read that one way that people lose iron is that they have horrible bleeding in their small intestines and it can go on for years, or forever, until someone discovers it. It was called some specific thing, can't recall at the moment, but why don't they think about that kind of possibility instead of scratching their heads? Holy crap, the guy who gave me the infusions is a double doctor and a professor yet he seems as dumb as a stone when questioning things like my ferritin levels actually becoming lower.

Oh well, it is what it is....
Last edited by EeFall on Thu Mar 28, 2013 9:10 am, edited 1 time in total.

ViewsAskew
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Re: No WED/RLS Talk Here!

Postby ViewsAskew » Thu Mar 28, 2013 5:20 am

EeFall wrote:
I have read that one way that people lose iron is that they have horrible bleeding in their small intestines and it can go on for years, or forever, until anyone discovers it. It was called some specific thing, can't recall at the moment, but why don't they think about that kind of possibility instead of scratching their heads? Holy crap, the guy who gave me the infusions is a double doctor and a professor yet he seems as dumb as a stone when questioning things like my ferritin levels actually becoming lower.


This is one of the more fascinating (scientifically) part of WED. It's as if our bodies eat iron. A person without WED who gets an infusion can expect the blood stores to be good forever, just about. Well, a bit of an exaggeration, but, still.

Us? The original Johns Hopkins research showed that within a few months, people would go back to baseline! Each infusion, however, increased the time it held. I can't remember, but I seem to recall it took 3 before it seems to last for awhile. Have the blood guy look up those experiments. He won't wonder anymore where the iron is going. I mean, he'll wonder like we all wonder, but he won't think you have a stomach ulcer or bleeding in the gut somewhere.
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.

EeFall
Posts: 1494
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: No WED/RLS Talk Here!

Postby EeFall » Thu Mar 28, 2013 9:16 am

ViewsAskew wrote:
EeFall wrote:
I have read that one way that people lose iron is that they have horrible bleeding in their small intestines and it can go on for years, or forever, until anyone discovers it. It was called some specific thing, can't recall at the moment, but why don't they think about that kind of possibility instead of scratching their heads? Holy crap, the guy who gave me the infusions is a double doctor and a professor yet he seems as dumb as a stone when questioning things like my ferritin levels actually becoming lower.


This is one of the more fascinating (scientifically) part of WED. It's as if our bodies eat iron. A person without WED who gets an infusion can expect the blood stores to be good forever, just about. Well, a bit of an exaggeration, but, still.

Us? The original Johns Hopkins research showed that within a few months, people would go back to baseline! Each infusion, however, increased the time it held. I can't remember, but I seem to recall it took 3 before it seems to last for awhile. Have the blood guy look up those experiments. He won't wonder anymore where the iron is going. I mean, he'll wonder like we all wonder, but he won't think you have a stomach ulcer or bleeding in the gut somewhere.


Maybe that is how depleted our bodies are of iron, that it takes 3 shots just to fill up the tank, like we are on empty.

rthom
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Re: No WED/RLS Talk Here!

Postby rthom » Thu Mar 28, 2013 9:42 am

:roll: :lol: :mrgreen:

cornelia

Re: No WED/RLS Talk Here!

Postby cornelia » Thu Mar 28, 2013 11:57 am

I think this is een interesting read on the subject:

Sleep Med. 2005 Jul;6(4):301-5. Epub 2005 Apr 1.

Repeated IV doses of iron provides effective supplemental treatment of restless legs syndrome.
Earley CJ, Heckler D, Allen RP.


Source
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA. cearley@jhmi.edu
Abstract
BACKGROUND AND PURPOSE:
To evaluate in RLS patients the efficacy and safety of repeated infusions of iron in order to maintain symptomatic improvements achieved with a prior single 1000 mg infusion of iron.
PATIENTS AND METHODS:
Subjects who had demonstrated initial improvement in RLS symptoms after a single 1000 mg infusion of iron were evaluated monthly for serum ferritin and RLS severity. If symptoms returned at any time in the 2-year period after initial iron treatment, supplemental 450 mg iron gluconate infusions could be given, provided the ferritin was <300 mcg/l. The primary outcome measures were side effect profile, duration (weeks) of sustained improvement, and rate of change of serum ferritin.
RESULTS:
Ten subjects received the initial single 1000 mg dose of iron dextran, but only five subjects were eligible to receive supplemental iron infusions. RLS symptoms returned on average 6 months after the initial 1000 mg infusion. Because of noncompliance with monthly visits one subject was dropped after receiving three supplemental iron infusions. Because of a ferritin >300 mcg/l, a second subject was dropped after having received one supplemental treatment. Three subjects completed the 2-year period of the study, having received between two and four courses of supplemental iron. After the initial 1000 mg iron infusion, the ferritin declined on average 6.6 mcg/l/week, which was substantially higher than the predicted value of <1 mcg/l per week. The rate of ferritin decline decreased toward normal with repeated IV iron treatments: the average rate of decline in ferritin for the last treatment course was 2.3 mcg/l/wk. The slower the rate of ferritin decline the more prolonged the symptom improvements.
CONCLUSIONS:
Supplemental iron treatments can sustain previously achieved improvements with a single IV iron treatment, but achieving high ferritin levels was not in themselves a guarantee of sustained improvements. The most notable finding was the post-infusion changes in serum ferritin and its implication for altered iron excretion.

Corrie

ViewsAskew
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Re: No WED/RLS Talk Here!

Postby ViewsAskew » Thu Mar 28, 2013 8:51 pm

That's the one, Corrie! Thank you.
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.

rthom
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Re: No WED/RLS Talk Here!

Postby rthom » Thu Mar 28, 2013 10:07 pm

isn't this one the same as the other post?

Polar Bear
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Re: No WED/RLS Talk Here!

Postby Polar Bear » Thu Mar 28, 2013 10:29 pm

rthom - yes, I copied this and posted it onto the other thread for information purposes about ferritin.
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

rthom
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Re: No WED/RLS Talk Here!

Postby rthom » Thu Mar 28, 2013 11:23 pm

glad you told me i was about to ask you to explain it again....
;-(

EeFall
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Re: No WED/RLS Talk Here!

Postby EeFall » Thu Mar 28, 2013 11:26 pm

I need to print this info and send to my iron infusion doc! Thanks guys.


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