Restless Legs Syndrome (RLS) Discussion Board

I've been having neurological symptoms for the past 9 months. I've seen three neurologist so far and they all have a different opinion. All tests have come back clear. One neurologist believes I may have restless legs. I have unusual sensations mainly in my legs, sometimes in my feet and all the way up to my thighs, but mainly in my lower legs. It's a kind of buzzing, tingling, internal shaking sensation. I also get an internal vibration feeling in my arms and chest. I have muscle twitching which can take place anywhere in my body. Sometimes I wake up at night and feel that I am buzzing all over. I don't have an urge to move my limbs. Very occasionally, I find that if the sensation runs under my foot and up my calf, I then feel the urge to move. But this happens rarely. The sensations in my legs are always there. If I'm moving or distracted I don't notice it. Always worse if I'm sitting unoccupied or lying down. Could this be RLS? I had RLS when i was pregnant and it was very different to this - i had an urge to move my legs at night and i had no sensations whatsoever. I've been prescribed Pramipexole. Took one low dose pill last night and didn't notice a reduction in sensation. How long does it usually take for the medication to work? Any advice would be greatly appreciated.

There are no lab tests to diagnose RLS. Doctors may run tests for other things to rule them out and will frequently order blood tests to determine various iron levels, which can result in secondary RLS when they are too low.

The diagnosis is frequently done using a questionnaire where the patient scores ten questions on a scale of 0 to 4.

However, of the questions, the key one in your case will be - Is there relief from the sensations by moving the affected limb? For example, if the pain is in your legs, does walking relieve the pain during the time that you are walking? If you still have leg sensations while walking, then it quite probably is not RLS.

As for pramipexole, if your problem is RLS, then pramipexole should provide relief within an hour or so for a first time user. So, this might be yet another strike against the theory that you have RLS if the pramipexole did nothing.

But each of us is different and none of us on the discussion board are doctors, so I encourage you to learn what you can and then discuss it with the doctor who provided the RLS diagnosis.

I would add that, to me, there are two keys. While there have traditionally been four criteria, two are essential and must be present.

One, as Steve noted, is that movement MUST make the symptoms better. The other is that there MUST be an urge to move. Not everyone has the sensations, as I understand it, but everyone has an urge to move.

I also agree with Steve - if the pramipexole didn't do a thing, that is definitely important. It could be that the dose is too low, but usually even a small dose at least helps some.

You have RLS when pregnant. You know what it feels like. It sounds to me as if you know your body and what RLS is. As far as I know, no one had experienced it one way at some point to experience it a different way later.

I have a friend who has fibro. For what it's worth, he talks about a buzzing feeling that sound similar to yours. And, the muscle twitching could be benign fasciculation syndrome.

If, as you've said, the sensations are rarely accompanied by an urge to move, then it sounds like you may have something else going on and it's not likely RLS.

I would caution that, if it does turn out to be RLS, don't take the decision to go on medication lightly, especially a dopamine agonist such as pramipexole. My doctor assured me that I would not have any long-term issues from being on a low dose of pramipexole, but he was wrong. Augmentation is a very real possibility, even at a low dose, and for many of us the withdrawal symptoms are almost unbearable. I'm still on pramipexole only because I've failed on three attempts to get off of it. In hindsight, I wish I'd never gone on medication long-term, as my symptoms used to be variable (usually worse in the fall) and now I have moderate to severe daily RLS, most likely because of the augmentation caused by the medication. There are other options, and if you do decide to go on medication, alpha-2-delta ligands such as gabapentin may be a better choice, unless you have depression issues.