How Do You Know For Sure It's RLS

[WR Nightwalker]

I am from Virginia and I am new to this forum. I am wondering how long it takes to diagnose RLS and how you know for sure you have it? I herniated a disc a year and a half ago and a piece of the disc chipped off and lodged under a nerve causing severe pain. I did not have surgery but instead 2 epidurals and PT. My left leg and foot were affected and my foot has never felt the same.Months later I noticed an occasional "twitching" feeling in my left leg. Then four months ago this got much worse and also started in my right leg. I also have trouble with nocturnal leg cramps in my left foot and ankle area. It now affects me every night and anytime I am sitting and my mind is not occupied.

I went to my primary care dr. twice. He listened to my concerns, did not do any type of neurological workup and said its probably "restless legs". Not being familiar with this, I ask him if this could be anything neurological to which he promptly told me "no". When I ask him about my sleeping problems he said, "Just get up, get a journal, and start writing your thoughts when you can't sleep."

The problem has continued to get worse. I see so many of you write that the feeling is not like twitching. That's how I describe it. Although it is sometimes a bit of a burning sensation and now and then I feel like I'm experiencing the same sensation as that of a tens unit. The "twitchy" feeling moves around to different spots. I wake up several times at night and as soon as I am aware, it starts...UGGH!! The only relief I get is if I move my legs a lot. I never feel it when I walk or stretch or when I have to do something that requires a lot of thinking. When I think about it, I have been waking up and moving my legs because they were hurting for quite a while. I just never had this twitchy feeling frequently, until 4 months ago. It is also always worse if I experience a stressful situation, particularly if it is later in the evening. The other night I had a very stressful evening meeting and it was an awful night.

Recently, I have seen a neurologist. He gave me a great exam and said everything looked good. No signs of loss of strength anywhere. He said it could be Benign Fasciculation Syndrome. The second time I went he gave me valium, to try and relax my muscles. I have not taken it yet. We talked about restless legs and he said if that's what it is I would probably always have it. But still did not say that I definitely have RLS.

[Polar Bear]

RLS is pretty much diagnosed by ruling out any other possibilities. There are no tests that will confirm a diagnosis.
From your description it sounds like RLS to me.

If it helps, here are the questions to help determine if it is WED:

1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When are your symptoms least?
12. Do you find your symptoms are less in the morning?

Many of us have to help our GP along and many of us provide some relevant information. RLS is not a condition where doctors receive a lot of training and many just don't know how to treat it.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. I use this book for reference, it is full of my pencil notes, and it goes with me to any doctor appointment I may have regarding my RLS.

As your Neurologist has prescribed Valium as a treatment for your RLS it does not sound as though he is well versed in the treatment. Valium just may help you sleep, that's if you can get over to sleep despite your symptoms. It will not really help the symptoms. If you don't get to sleep and you have taken Valium then you are in the unfortunate position of being sedated but sleepless..... not a good state of affairs.

Many folks have taken a long time to get a diagnosis, and also to get treatment, appropriate treatment.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

You describe your symptoms as twitching.... we don't all have the same sensations or the same way of describing them. And indeed, some sufferers have pain and others don't, although I consider the horrific sensations as a type of pain.
in my opinion - cramps aren't really a symptom of RLS but I am open to correction on that.

Yes, stress can be a trigger, as can back pain/injury/surgery.

Some years ago I had a spell with horrid burning sensations on my foot, never knew if it was truly a part of my RLS, or neuropathy.

[WR Nightwalker]

Thank you. My OB/GYN checked my ferritin level it is 99. I will certainly order the book you have recommended.

[ViewsAskew]

Welcome, WR. So sorry you had to find us. Here is a bit that may help.

For an unknown reason (there are some hints and hypotheses, but nothing proven), people with back issues seem to have an increased rate of RLS/WED. So, it matches in that way.

When you said your symptoms felt more like the sensation with a TENS unit, that's similar to how I'd describe mine - it's electrical, annoying, constant, and makes me anxious. This sensation increases in intensity the longer I stay still. Only with movement (or my mind being sufficiently distracted) will it stop. It's not painful like typical pain, but it wears you down, like pain does.

Your description is pretty consistent, I think, with what most of us say. If I had to guess, I'd say it is RLS/WED. Benign fasiculations can actually sometimes be seen - the skin rippling and moving. And, if could be neuropathy, but if a neuro didn't find that, you're likely in the clear. Neuropathy is a stinging and hot sensation, often in the feet (but can be anywhere). I've only had it very mildly as a side effect of a medication - for me I would move when it happened, but it was different - it was definitely painful to me.

The questions above are great. There a few criteria that doctors use - test these:

1. Worse at night; and in many cases, are only at night. They rarely occur during morning. This assumes, of course, that a person follows a normal sleep pattern of going to bed between 9 and midnight. The later you go to sleep, the later the symptoms are active.
2. Urge to move, usually as the result of uncomfortable sensations that can be electrical, painful, wiggly, etc.
3. Symptoms go away with movement - and sometimes mental concentration (though when very severe, that often isn't enough).
4. Symptoms are triggered by rest, quiet, relation, quiet mind. For some, this is only at sleep onset. For others, it's at dinner, the movies, the symphony, or anytime not being active.

The worse it gets, the longer the sensations last throughout the day. For a few, they can occur round the clock.
4.

[WR Nightwalker]

Thank you, this is very helpful.