I just got my labs...

[woodsie357]

I got my labs and I don't know enough about them to know if they are good.. But my first impression is that they are good, or great even. So if someone knows please let me know.

Iron Bind.Cap. (TIBC) Result = 319
UIBC Result = 190
Iron, Serum Result = 129
Iron Saturation Result = 40

FERRITIN, SERUM Result = 159


My question is ... Why do I still have RLS 24/7?
I was planning on being cured by an IV iron treatment. This kinda throws a wrench in my plan.

[woodsie357]

I just talked to my mom. I've not seen her in 10 years. And I hardly ever talk to her. Not because I don't want to but because she's not chatty. Both my parents have 1 word replies to every question you could ask. Sure, fine, nothing, and stuff.

Anyway I called her today because I got my labs back and my iron is great, from what I understand. And my whole goal of being on RLS foundation is because I want to figure out what causes my RLS. She told me that she doesn't know of anyone on her side of the family with RLS. Take into consideration that she talks to the rest of the family probably less often then she talks to me. She did say that there are tons of cases of MS in the family. I know a lot of MSers have RLS in addition to MS, but I had always thought of MS as a secondary reaction to a virus that they had as youngsters.

I guess I'm one of those idiopathic RLSers. Any one else an Idiopathic RLSer I'd like to know if I have company.

Thanks! You guys have always been so great to me!

[Sojourner]

w, I guess I would count myself in as on of the "idiots." I think for most we do not know of a cause for our rls. For some it is hereditary but that perhaps is more of explanation than cause. Of course there is the gene research and dopamine theory. But, for most, their iron is fine, quitting caffeine helps or not, exercising helps or not, eating right helps or not, vitamins help or not- blah, blah, blah. Did I mention the gene research and dopamine theory. For most, we're stuck with it and a little tweaking here and there helps but these secondary factors don't seem to be the root cause. It's likely that the gene/dopamine thing is the culprit and not much to do except grin and bear it or try to find some things such as life style changes or meds with the hope they will help. Luckily, for most, some secondary factors can be isolated and remedied and/or some medication(s) can restore the dopamine balance or ease the pain. In any event, I am guessing most of us are "idiots."

Now looking at your labs, Congrats but I would just like to caution you to stay away from magnets.

Best wishes, my friend

M.

[woodsie357]

ROFL, you gave me many smiles tonight! I'm happy to be an "idiot" with you =)

[Neco]

Damn, your ferritin is better than mine. Mine came in at a couple points of 100. I think to see any effect on your RLS you need to get your ferritin levels up around or above 200, as that is the experience they had with RLS remission in the Johns Hopkins Study.

Many of us with 24/7 RLS have pretty average, if not at least normal, ferritin levels. Nobody can explain why. But the key seems to be the level of iron in our Cerebral Spinal Fluid (you need a spinal tap for this, its really dangerous and it really hurts, not a good combo when you have to remain absolutely still). I believe everyone with severe RLS, irregardless of blood iron levels, probably has low CSF iron levels. But until we get a real mass-study done, I don't think there is any other way of confirming it.

[ViewsAskew]

I don't remember if the J Hopkins studies even gave iron to people that had it over 50. For some reason I think it was only people with low ferritin...

This documentis excellent as summing the role of iron, what's been done to date, etc.

In the first published study, which I just re-read, 3 of 10 people had NO response. They didn't say how high the ferritin was of the 10 patients.

I couldn't find any other published results in my search (but I didn't search for long); I know their work is ongoing, but thought they'd published more than one study.

[SquirmingSusan]

My question is ... Why do I still have RLS 24/7?
I was planning on being cured by an IV iron treatment. This kinda throws a wrench in my plan.

Um, yeah. You're likely one of the people who just doesn't respond to raising the ferritin levels, since they're already nice and high.

That's a good link, Ann. My ferritin levels were 12 a few weeks ago, after months of taking iron supplements, so my doctor is sending me for IV iron.

There are two current formulations
that do not carry with them the notable problem of anaphylaxis (a sudden, severe allergic
reaction), which may occur with the formulation known as iron dextran. These preferred
formulations are iron gluconate and iron sucrose. They are FDA-approved for use with iron
deficiency associated with anemia or with dialysis but are not approved for use in treating RLS.

I'm getting "Ferrlecit" which is the iron gluconate. I've had 2 of the 8 infusions she prescribed. Last time I had infusions, I had "Venifer" which is the iron sucrose. The iron that's getting infused should stay put this time, since I've dealt with the issue of heavy periods draining my iron back out as fast as I can put it in.

I know that it helps my RLS a lot when my iron is higher, but I've sure had a hard time keeping the iron in me. One study that I read, about iron infusions, showed that some of us just get rid of iron too fast from our systems, but with repeated infusions, that process slows down eventually and it starts to "stick."

Some good news is that my insurance actually covers IV iron treatment for "low ferritin levels." That's how it was billed to my insurance last time, according to the hospital admitting department, so that's how it's going to be billed this time.

I doubt I'll be "cured" by the treatments, but historically it's helped me. Although I do think that, for me, the weather trumps IV iron. I was feeling great after my first treatment on Monday. Then about 2am Friday morning, my right leg had a PLM - my foot flexed up toward my nose rather dramatically, and then all hell broke loose in my leg. I was dancing around the house for an hour until my methadone kicked in. It was like someone flipped a switch. Then it started snowing.

I don't mean to hijack your post, though...

[dogeyed]

In any event, I am guessing most of us are "idiots." Now looking at your labs, Congrats but I would just like to caution you to stay away from magnets. Best wishes, my friend M.

Soj, you are one funny cat.
Wood, no one in my family has rls, jus me. I think it was triggered by my bad back. GG

[Neco]

I woke up and there is almost half a foot of snow on the ground... grrrr

I have been trying to pay more attention to the weather, and I think that I do get worse when it gets really cold..

[woodsie357]

in 1995 I was prego with my first baby. I used to run not walk everywhere I went through my whole childhood. This didn't seem to stop during my pregnancy I was running through an empty parking lot 8 months along, just like I always did. Then SNAP something in my right hip area went snap, and pain omg the pain. I limped around and hobbled for the next 6 weeks. What ever I did, I couldn't stand up straight. It seemed one leg was 3 inches longer then the other leg. Thats the first time the RLS started, that night after my running injury. I'm pretty sure it went away after baby was born, returned with prego2, went away, came back with prego 3 and went away for a few weeks then came back prego 3 was in 2000, and I think it came and went through 2004. in 2004 it never went away severe 24/7. prego4 was in 2006 I knew I was in for a great amount of torture. During the delivery I had secret bleeding the connection was ripping. my blood pressure was dropping due to blood loss. They gave me medication to raise my bloodpressure, which only made the bleeding go faster. they came and took the baby, then realized that I had nearly bleed to death. They didn't even tell me all this, I found out from my neuro, he did some research and found my ferritin was under 20. and my recent near death experience. Started me on Ferrous sulfate 325mg x2 daily 2 years ago, so I guess I'm absorbing better then average, but my symptoms don't wanna go away, I remember one poster saying hormones played a big role in her RLS. wonder if it does for me? Just grabbing at straws now.

thanks for the replys

Hey Views (Ann) the Dr that wrote that article is the Doctor I'm seeing. Thanks for posting it.!

[ViewsAskew]

Woodsie...forgive me for playing devil's advocate, but....why does it matter? The ONLY reason it would matter is if you have undiagnosed celiac, diabetes, MS, or one of the other things that RLS tends to come with and they needed to be treated.

If you've had those tests (and I am guessing you have), you're just worrying yourself sick.

Since 50% of RLS is idiopathic and most cases associated with the above (except potentially celiac) are identified quickly as being associated with the above, you're totally in the norm.

I'm not saying not to do due diligence. Ask, have the right tests done, then let it go.

And, now that I've said that, let me say that I'd have a hard time taking my own advice! That doesn't mean it's not good advice . Just that I'm a bit slow letting go at times...

[Aiken]

I still postulate that there are several different diseases that all produce RLS.

After all, RLS is a not a disease, but a syndrome. A syndrome just a collection of symptoms. Those symptoms are ultimately the result of something specifically wrong with us, and what's wrong in one person may not be what's wrong in another.

(Consider nausea... many things cause that symptom, but when you've got it, it's a pretty consistent sensation regardless of what caused it.)

So, I think some of us respond to raising ferritin because that helps what was wrong with us in the first place. Something about raising our ferritin helps our dopamine systems function more correctly. That in turn reduces the symptoms we call RLS. On the other hand, I think some others in the group have dysfunctional dopamine systems for a different reason. Giving them iron is like giving someone a flu shot to prevent food poisoning. It might be nice to have the flu shot, but it's not going to help you with e coli.

Anyway, that is my theory. Given for free, and possibly worth what you paid for it.

[ViewsAskew]

Aiken, I like your theory and agree for the most part. I'd only differ from you in the sense that I do think it's a disease already, not a disorder. In a private conversation with one of the RLS docs a year or so ago, I asked if he thought it was still a syndrome or if it was a disease and he said it was a disease. He said they had too much info that pointed to specific causes and that we had the gene research. He said it was just a matter of time before they'd be able to link it even further. Of course, just his opinion, but it makes sense to me.

So, here's where I think you're totally spot on: There are currently 3 or 4 different genes identified (in different parts of the world) and the next one was just identified this fall. A woman from the Midwest had a large family, many who have RLS. They did studies and isolated the genes....and yet another one cropped up, if I am remembering this correctly.

So, maybe it is that you get different symptoms and treatments based on YOUR set of genes causing RLS. All of them may involve some level of iron and dopamine, but maybe in differing ways, hence differing symptoms and treatment. Taking your example, in gene set 1, ferritin may be increased by infusions; in gene type 2, it cannot be for some reason.

It's possible that every one of us has the potential for RLS given the right circumstances - that it's something we all have in common, hence that something like 80% of dialysis patients get RLS. But that those of us with one of the gene sequences set it off in novel ways.

Guess we'll know when they know, huh? (Oh, and this is just my brain's way of trying to make sense of it....it may have no basis in reality - it just works for my brain.)

[Aiken]

That's a good point about the genes. That definitely means there have to be at least a few differences between us, be they small or large.

I think RLS will remain the umbrella, but maybe it'll be RLD when it's an official disease, and we'll have RLD Type A, B, C, etc. in the end.

I'll have Type F because I have a gene that inhibits iron absorption, or maybe Type R because I have a gene that made my stomach valve malfunction, which forced me onto meds, which reduced my stomach acid, which inhibited my iron absorption.

You'll have Type A for some reason that might also explain why you augment so badly on DAs.

Woodsie might have yet another type that's peculiar to those who don't respond at all to iron, and so on.

Should be interesting... I don't think it'll take too long. Interest, research, and progress have started to grow somewhat exponentially.

[ViewsAskew]

Yup - I think you're right, Aiken. Let's just hope we can all help a bit by renewing or taking out our first RLSF membership Every dollar helps to support this vital research. And, sooner sounds better to me than later when it comes to real treatment based on what actually happens.