Hi Gobabygo:

I thought I didn't have RLS either, because I don't twitch (exactly).

My RLS presents as pain. An aching pain that builds and builds and becomes unbearable. If I did twitch, I think that would bring relief... It's like I get the pre-twitch feeling and am stuck there--in pain--as the feeling builds relentlessly.

The definitive thing (in my case) was that it only occurs when I am sleeping or very drowsy (like lying down, watching TV in the early evening--close to falling asleep---or totally relaxed, riding in the car on a long trip).

I've since learned that RLS has a variety of presentations. My symptoms are in my thighs, not calves. Evidently, symptoms can appear on more than just lower legs--including (but not limited to) upper limbs and shoulders etc.

I've never heard of any "test for MS." Diagnosis, I've understood is from a process of elimination.
I copied this from a Mayo website: "There are no specific tests for MS. The diagnosis is given by a combination of medical history, physical exam, MRIs and spinal tap results. A diagnosis of multiple sclerosis also involves ruling out other conditions that might produce similar symptoms. This is known as a differential diagnosis." ... Something like an MRI would be looking for an alternative explanation--not an "MS finding."

RSL also is a differential diagnosis.

Most generalist-doctors treat RLS incorrectly, prescribing a drug like Requip--which works great initially, but eventually causes augmentation (a worsening of symptoms in terms of frequency and severity ---a worsening that doesn't improve). My RLS neurologist believes everyone on this kind of drug will eventually have augmentation.

So, you want to find a specialist, who understands RLS. Typically, this would be a neurologist. But, again, common treatment can be counter-productive because most run-of-the-mill neurologists also prescribe dopamine agonist drugs (that lead to augmentation).

I also learned that a number of other drugs can make RLS symptoms worse. I tried a prescription muscle relaxer, Benadryl, and melatonin to help with bad sleep that came along with RLS and found on nights I took these my symptoms were just terrible. I also learned allergy medications (OTC) can make symptoms worse.

Only a true RLS specialist knows these things. My primary doctor sure didn't.

There is a RLS Foundation website and a number of doctors are on their board of directors. These guys all know what they are doing. And, there are neurologists at Mayo and Stanford who are capable of treating RLS. ....It depends on where you live how you find a RLS doctor. I never needed to reach out to the RLS Foundation for a doctor recommendation, but I would trust a doctor they sent me to see.

You might have to travel to find a capable doctor and you might have to wait for an appointment. I did.

But, in my opinion, that would be better than running the risk of augmentation (getting a prescription from someone who doesn't understand RLS).

I would ask any doctor from whom I sought treatment if there is any risk of augmentation from the RLS drug he (or she) wants to prescribe.

Getting effective treatment is a process. Iron levels are checked because some kind of low iron in the brain was found causative (after researchers examined hundreds of post-mortem brains of people who suffered from RLS---research funded I understand by the RLS Foundation). Then, IV iron can be effective. (It wasn't for me).

First line drugs include gabapentin and pregabalin, which also didn't work for me.

I understand RLS does "run in families" so the fact you have a sister with RLS could be significant. Nonetheless, you haven't officially been diagnosed, yet, so that would be the first step. And, again, this is done by a review of symptoms and a process of elimination. RLS doesn't show up on brain scans or in blood work.

I went through a lot of hellish, sleepless nights before I was diagnosed. I thought my problem was muscular and I keep going back to physical therapy--for years. But, now--with the help and understanding of my RLS doctor---my RLS is very manageable. I'm not cured. There is no cure. But, I have sufficient sleep instead of insomnia. I take medication and I also (just two weeks ago) got a wearable device that helps counter symptoms. Not every night is perfect, but my quality of life is so much improved with adequate sleep.

I don't know if there is a difference --or a difference in practical terms--between Periodic Limb Movement Disorder (which just sounds descriptive to me instead of causative) or RLS (which also sounds descriptive and not causative). It helps me to think of my symptoms as brain-induced (like seizures). They aren't something I can control by what I do in the daytime (how I exercise or what I eat or how I pray---although God knows I have tried all these things). They are bad enough to warrant medical intervention. Good medical intervention (from a RLS specialist).

I hope this helps, Gobabygo!