How were you diagnosed with RLS?

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pinkynose
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How were you diagnosed with RLS?

Postby pinkynose » Sat Aug 29, 2015 3:24 pm

I am going to a Neurology specialist soon and would like to know how it was determined that you have RLS? I ask because when my symptoms 1st started I was sure it was RLS. However when burning began a few months later it overshadowed all the other symptoms. I went to a neurologist who did nerve testing and found nerve damage in my feet and symptoms resembling Small Fiber Neuropathy.

I do not contest this possible diagnosis, but feel RLS is a secondary disease I may have because of twitches/muscle pulling that occur pretty consistently at about the same time most nights. This is not a symptom of small fiber neuropathy.

My last neurologist wasn't much of a believer in RLS and I just want to know how I might go about getting an accurate diagnosis.
Thank you

badnights
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Re: How were you diagnosed with RLS?

Postby badnights » Sat Aug 29, 2015 8:32 pm

Ann has some great posts on this. She will probably deliver something good for you. Meantime, I Can say that the neuro should question you on each of the 5 diagnostic criteria. The most important ones are the urge to move and the relief from movement. There need not even be sensations accompanying the urge. If you have the urge to move your limbs, and it's relieved by movement, that suggests WED/RLS - it does not happen in small-fibre neuropathy, I don't think.

The other criteria must be met as well - -Does rest (physical or mental) bring it that urge to move (and accompanying sensations)? Is the urge to move (and accompanying sensations) worse in the evening/night?
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: How were you diagnosed with RLS?

Postby ViewsAskew » Sun Aug 30, 2015 5:03 am

Beth pretty much nailed it. The short answer is that there is no test, per se, just "yes" answers to relevant questions. They are usually variations of:

1. Symptoms are worse at rest.
2. There is a strong urge to move that is often (though does not have to be) accompanied by a creepy-crawly, painful, electrical or otherwise annoying sensation.
3. The urge to move goes away when you move - walking, exercising, etc. It lessens or goes away when something commands your attention - a problem to solve, even a puzzle - but something your mind has to work at.
4. Symptoms are worse at night - it depends on severity, but the worse for all of us is usually that 9 or 10 PM to 1-2 AM range. Of course, this assumes a regular schedule. If you work second or third shift, yours would happen at your bedtime, whatever that is.
5. Nothing else can account for it - non neuropathy, for example.

It can be hard to diagnose - but it's much harder when you do have one of those other conditions - nocturnal leg cramps, neuropathy, and so on. They can (and do) often coexist. There really isn't a question of one causing the other for these - they just happen at the same time. RLS is usually secondary to things such as diabetes, Parkinsons, kidney failure, pregnancy, several autoimmune disorders, anemia, and others.

Finding a neurologist who is willing and able to tease them apart is crucial - as you likely already know - and can be hard.

Some RLS/WED specialists feel that if you respond positively to a dopamine agonist, you almost assuredly have RLS/WED.It could be one way to figure it out. Things like gabapentin can work for both neuropathy and RLS, so it can't help in that regard.

Does what Beth and I said help at all?
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.

pinkynose
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Re: How were you diagnosed with RLS?

Postby pinkynose » Sun Aug 30, 2015 2:16 pm

Yes, it does help and I thank you and Beth for reaching out.The main problem I am having with trying to figure this out is because yes, the leg twitching or muscle pulling occur pretty exclusively between 1:00-2:00 however, I can (for a period of say 5 minutes time) use my will power and not move. If it lasts longer then my will power I will get up and move. This symptom lessens to a degree when I'm medicated (Gabapentin) and then I can feel the twitching but it feels weaker and seems to be more under the surface. When this occurs I can put up with it but not sleep. My getting up may be from sheer frustration. I also have lost the patience to see it through and often wind up taking an Ambien, which knocks me out and I don't have to deal with it. In this way I am making it more difficult to figure out. The up side of my disease is I've begun to be able to look at myself honestly without beating myself up further. The disease is already doing that.

ViewsAskew
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Re: How were you diagnosed with RLS?

Postby ViewsAskew » Sun Aug 30, 2015 7:43 pm

It can be hard to tease out why you are moving. So, when I feel the icky sensations and feel I MUST move, if I move, the sensations go away. If I do not move, they build up - almost like an energy charge. The longer I wait, the more it builds, until my limbs move almost as if on their own. But, if I really pay attention, it's me moving them to release that pressure/charge/feeling/need to move. Is that what you do?

When you first feel it, do you ever move to see if it would go away? If you haven't, maybe try stretching, doing some yoga, or walking around the house for a few minutes and then see if you can get back to sleep. If this doesn't help, it may not be RLS/WED.
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.

pinkynose
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Joined: Sat Apr 25, 2015 10:58 pm

Re: How were you diagnosed with RLS?

Postby pinkynose » Sun Aug 30, 2015 8:21 pm

Thank you Ann! You made it very clear. I am going to pay attention the next few nights. I will let you know how it goes! :D

badnights
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Re: How were you diagnosed with RLS?

Postby badnights » Mon Aug 31, 2015 9:02 am

I can (for a period of say 5 minutes time) use my will power and not move. If it lasts longer then my will power I will get up and move. This symptom lessens to a degree when I'm medicated (Gabapentin) and then I can feel the twitching but it feels weaker and seems to be more under the surface. When this occurs I can put up with it but not sleep. My getting up may be from sheer frustration.
Sounds a lot like my WED/RLS, even to the effect gabapentin had on me when I was taking it. And especially the hyper-alertness you describe - when the symptoms are absent or dulled enough that they're not preventing sleep, but you still can't sleep. I am not sure how much of that is a reaction to meds (I take opioids, and many of us WEDers are alerted by opioids, opposite to most people) and how much is a part of the disease itself (the hyper-alertness is a known phenomenon among WED/RLS researchers, but not super well-known among physicians).

So I suspect you're going to decide you have RLS/WED, whether or not you turn out to have neuropathy or something else as well. Hopefully your new neuro will have enough experience to help out with the diagnosis :)
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Sunnyboy
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Re: How were you diagnosed with RLS?

Postby Sunnyboy » Wed Sep 23, 2015 4:53 am

I was diagnosed by a very good neurologist-one recommended by RLS-- I also have Graves disease (treated with I/131), diabetes with neuropathy, insomnia,lymphedema, obesity, and depression. He was able to ask the correct questions and my answers convinced him that I also had RLS. My RLS is now considered severe and I take Oxycontin for the pain. Now that I am retired and sit more than I did when working as a RN, my symptoms have worsened. Sometimes I wake up with RLS and usually reoccur at bedtime and sometimes in the afternoon

badnights
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Re: How were you diagnosed with RLS?

Postby badnights » Sun Oct 04, 2015 11:46 pm

that's dreadful, Sunnyboy! Did you know that some antidepressants in some people worsen the WED/RLS symptoms? Might be worth thinking back to if your RLS/WED became worse after you started AD's, if you're on them.

Try to move as soon as the symptoms come on, .They get much worse if you wait. AS I;m sure you know.
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.

tommy108
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Re: How were you diagnosed with RLS?

Postby tommy108 » Wed Apr 27, 2016 2:10 pm

My diagnosis came a bit by accident. I had surgery for an ingrate hernia, and to remove a cyst. So I was on Vicodin for three weeks. For the first time in years, I slept through the night, with my legs were steady and still. When I came off the meds, my restless legs came back with a vengeance. Also, I lost a lot of blood, as the cyst was very large wound that took a month to heal. So my iron was likely low.

Very helpful to see the five criteria, thanks for posting that Ann/Beth.

Couple things that kept me away from RLS diagnosis.

I don't have pain, creepy, tingling etc. I have an energy rush, need to move.

I urinate urgently and frequently throughout the night.

When you google RLS, what comes up is real basis symptoms...like grandpa shuffling his feet under the covers. It wasn't until I got to this page that I realized other people had it like me.


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