Brief Answer:
Question possible RLS- Probably not BECAUSE

Detailed Answer:
Good afternoon sir. My name is Dr. Saghafi and I am a neurologist in the XXXXXXX OH part of the world. Greetings to you in, what appears to be, Round Rock, TX

I understand you carry a diagnosis of POTS and and PLMB (which goes by better acronym of PLMD- Periodic Leg Movement Disorder). If you look on a sleep study and see the abbreviation of PLMS then, they are referring to Periodic Leg Movements of Sleep). You report twitching and crawling feelings in the leg which are 24/7 and worse when active. You've had it for years and at times you feel the sensation migrates to the arms. It seems that your neurologist has been a bit more focused on the POTS but with these uncomfortable sensations you are only able to get 4-5 hrs. of sleep. You take propranolol for the POTS. You'd like to know what questions to ask the neurologist to make sure all the bases are covered.

So, my first impression in reading the description you've presented is that I understand WHY your neurologist is not willing to easily give you a diagnosis of RLS and I can perhaps explain the rationale...but frankly, if you want it to come from the horse's mouth that would be the first question to ask:

1. Why are my symptoms NOT leading you (the neurologist) to think of RLS as the diagnosis so that I may be treated more specifically for this disorder and so I can perhaps get some relief at night since I'm not sleeping well.

Perhaps, you'd want to rephrase that a little but I think essentially that's what you're thinking, no?

Here's a reason to consider. Although your symptoms of uncomfortable feelings in the legs certainly sounds as if it SHOULD be diagnosable as RLS....unfortunately, the term itself and the publicity the disorder has gotten over the years has made the public believe that when the legs are uncomfortable virtually for any reason then, that's RLS. I've got patients who get downright angry with their docs because they believe, "It's a slam dunk....my legs are constantly bothering me....moving them all around....can't sleep at night...RLS...NEXT!"

But unfortunately, that is not all that is needed to make the diagnosis and there are several features of your presentation which clearly violate the diagnosis. One is the feeling of being 24/7. Typical RLS ONLY occurs just before going to bed, lasts for a transient period of time, causes people difficulty falling asleep for sure....but in the morning when they awaken....it's done....rest of the day is normal...until the night comes. That's a TYPICAL PICTURE of what a patient sees with RLS. It does not continue 24/7.

2. The spread of your symptoms into the UPPER EXTREMITIES is clearly NOT something that RLS is known to do.....Perhaps, there are other neurological conditions that can do this sort of thing (odd transient form os either peripheral neuropathy or myelopathy)....but it is not RLS. So that's a 2nd strike against the diagnosis.

And so for those 2 major reasons I would say your neurologist is entirely justified in not having made the call to this point.

Having said that, my opinion is that your neurologist should explain what he/she could be thinking in terms of giving some relief to these symptoms. So, let's agree that it's not RLS.....then, what's next? Well, I would likely be wanting to get a workup of blood, urine, and so forth to look for abnormalities in things such as B12, folate, Vit. D, heavy metals, liver enzymes, thyroid hormones, diabetic screen, iron and ferritin enzyme panel assays rolling to see what if any metabolic problems may be present to explain the symptoms.

I would be surprised if your neurologist hasn't done the majority of those tests if not all of them since he's been working you up for the POTS....but those could be some other issues you could bring up with him/her.

You can also ask him to explain why it is the case that people may very well have PLMD (involuntary jerking of the legs) which can interfere with sleep...but NOT HAVE RLS......In other words, it is usually the case that people diagnosed with TRUE RLS will have sleep studies that also show PLMS...but not vice versa.

In RLS the uncomfortable sensations in the legs force the person to move (sometimes violently) the legs whereas in PLMD the legs JERK on their own multiple times at night without there being any uncomfortable sensations and without any voluntary control by the patient over the jerks.

Here is a nice little summary...well, it's actually a nice BIG summary which is easy reading and may give you a few more questions to ask your neurologist regarding the different things going on with and their inter-relationships...and then, of course, the wild card in all this may be the POTS.....how is that tied in? Only your neurologist would know that answer for sure.....so best of luck when you speak to him/her about this situation.

Here's the link:

http://www.sleep-problems.org/Periodic-Limb-Movement-Disorder.html

Regards,

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