RLS going away, never to return

snowbound · Post by **snowbound** » Tue Sep 23, 2008 11:50 am

I'm curious,

has anyone here ever seen or heard of a case of RLS suddenly going away and not returning?

Once and a while my RLS symptoms almost dwindle down to nothing for a short while(sometimes 2 weeks, no meds involved) but i always know it will ramp up again in time so i enjoy the time when symptoms are very low.

Neco · Post by **Neco** » Tue Sep 23, 2008 3:16 pm

Many people do experience some periods of remission, whether it is a matter of days, weeks, months, or in some cases even a couple years.

But I've never heard of RLS going away permanently in a case of primary RLS.. The only situation I could see this happening is secondary RLS related to pregnancy or correcting another problem that would cause it like if your kidney if failing and then you have a transplant, etc

snowbound · Post by **snowbound** » Tue Sep 23, 2008 5:02 pm

Thanks Zach. The pregnancy thing makes sense as an underlying factor or as u mentioned major organ failure or transplant.

Does your's ever go into remission? When mine does, as i mentioned, it is a much welcomed break.

Post by **ViewsAskew** » Tue Sep 23, 2008 6:20 pm

Mine used to do that, Snowbound. It might have done it forever - my mom and my sister are both that way - but the artificial increase from augmentation (treating the PLMs - not the RLS) caused it to be daily. My mom is almost 70 and hers is still the same - periodic.

snowbound · Post by **snowbound** » Tue Sep 23, 2008 6:43 pm

Wow, i really feel for u Ann and the others here who have tried different medications to help either the RLS symptoms or some other movement disorder and paid a huge price because of augmentation. That is my biggest fear.

Terrible and unfair result surely for just trying to find relief from these awful things...

Sojourner · Post by **Sojourner** » Tue Sep 23, 2008 7:46 pm

Not sure I have ever gone into remission but I think the success I have with my med regimen often fluctuates. Sometimes I get very good relief for what seems like months and then I go for long periods when I seemingly get no relief at all. I fall into a chasm! I have been to the dr. office several times during these "stages" discussing the need for new meds, more meds etc. While we may have done some tweaking the regimen has been pretty much the same. I currently am going through or entering what seems to be a good stage. That is the med seem to be doing a good job and seemingly doing it better than before. I'm hoping this will last a long time but am not naive enough tho think it will last forever.

M.

Post by **ViewsAskew** » Tue Sep 23, 2008 9:17 pm

Thanks, snowbound. I know my results are a tiny, tiny minority of potential outcomes, however. I sometimes worry that others will believe that what happened to me WILL happen to them. According to the doctors, what happened to me shouldn't have happened (and doesn't happen). But, of all the thousands of people who have come to this site, it's only happened to three or four of us - the permanency, I mean.

If I had to do it over again, I would still take a DA. I'd just know to stop it the FIRST day I felt I had augmented. I wouldn't wait, I'd just stop.

I'd also try to increase the odds it wouldn't be a problem by getting my ferritin up immediately - preferably before taking the DA, but possibly at the same time.

snowbound · Post by **snowbound** » Tue Sep 23, 2008 10:32 pm

ViewsAskew wrote: I sometimes worry that others will believe that what happened to me WILL happen to them.

I'm one of them. :oops:

I'd just know to stop it the FIRST day I felt I had augmented. I wouldn't wait, I'd just stop.

I will be remembering this for sure if i get to the point where meds are needed. Thanks for posting this Anne.

I'd also try to increase the odds it wouldn't be a problem by getting my ferritin up immediately - preferably before taking the DA, but possibly at the same time.

I just went for blood tests for other issues and remember seeing a box on the referral sheet for ferritin but it wasn't ticked off. I don't know much about that but maybe i should return to my doc and ask to have this checked too. What should the level be for this? Is it different for male and female?

Post by **ViewsAskew** » Wed Sep 24, 2008 2:56 am

Yes, good idea to make sure it was ferritin specifically.

For anyone with RLS, they recommend that absolute minimum be 50 - but we've had people here who say they notice a difference when it's over 100 or even 150.

It's a hard decision about what is scaring people and what is knowledge, you know? If we all read every side effect on just about ANY medication, we'd likely never take it. But, some of those things are so rare that the cost benefit is worth it to try.

I believe the cost benefit of the DAs is favorable, but that everyone taking them should know exactly what can happen and what to look for regarding the likely "big" problems such as augmentation and compulsive behavior. As soon as you eat one extra donut or have RLS earlier in the day, it's time to check in and see what's going on. It might be nothing, but better safe than sorry. You can always try it again later to verify if there is a problem or not.

Aiken · Post by **Aiken** » Thu Sep 25, 2008 6:29 am

Ann--

The thing about the slim chance of permanent augmentation is that it's permanent.

I'm a lot more willing to take chances, even poor ones, when a bad outcome will eventually resolve itself. I have to be that way if I'm willing to put random colors in my hair.

But, when it comes to permanent, I'm cautious to the extreme. I've had too many things happen, due to poor risk assessment or even outright stupidity, that have permanently changed my life. These days, I look at it like this:

A man offers me a seat in a circle of 100 chairs. I, and 99 other people, will be strapped into those seats. Then, a gun with a single bullet will be spun on a tripod in the middle of the circle, and when it comes to rest, it'll fire. One person will die, and 99 will walk away with a million dollars each. Do I take the deal? Hell, no! But, you say, it's a million dollars, and only a 1% chance of losing! So? It's a 1% chance of *dying*. I don't get a do-over, a double-or-nothing shot. If I lose, I don't get to play again. There's no way to recoup my losses. I'd rather have to work all my life than look straight down the barrel and wish I hadn't gambled. There's nothing like that feeling of abject stupidity, of knowing I've made a terrible mistake. No thanks.

On the other hand, if it got so bad that nothing else worked, I wouldn't be so foolish that I'd never try a DA. I'd just rather not until I have to. I considered it this summer, but I squeaked through. Maybe next summer.

So, what I'm saying is, I think there's value in your story being told. Even if it scares away more people than necessary, I think that's the lesser of two evils when compared to not scaring away as many people as necessary.

Post by **ViewsAskew** » Thu Sep 25, 2008 6:12 pm

I tend to think like you, Aiken, but I also can see the other argument. That it WASN'T the drug that caused the permanence.

Now, I truly believe it was, but I cannot PROVE it. And, it could well be some other interaction that I just haven't accounted for. It did take place over a long time frame (over a year). Some doctors would say that it was the length of time and the RLS simply increased during that time. I'll never know what would have happened if they had taken me off of it more quickly, because they didn't and I had spent months going to various doctors trying to get help.

Was it the length of time I stayed augmented that caused it? Was it that I augmented at all? Was it that the RLS simply changed once it was activated?

It doesn't really matter in my future treatment, I suppose. But, it does matter how I frame it to others. I choose to follow your logic. There is a chance that it was the length of time augmented and a chance it was the act of augmentation alone. So, it's a chance is could happen to someone else. Like Susan.