Also Wondering

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Also Wondering

Post by Guest »

I'm sorry about asking this of you again, but I was wondering if my symptoms sound like RLS.

I'm always sleepy.
I can't sleep for more than 1.5 hours without waking up.
I don't have pain in my legs but I get very uncomfortable,(tingling feeling) if my legs or feet are touching, I always sleep with the sheets/covers between my legs so that they don't touch.
I had a sleep study done and there were "217 periodic leg movements", I had no stage 3 or stage 4 sleep and a decreased amount of REM sleep. I had no signs of Apnea. The doctor I was seeing only deals with Apnea so he couldn't comment on the leg movements.

I just had another sleep and MSLT study done yesterday but the results won't be available for 3 to 4 weeks.

Does it sound like I have RLS or am I just wierd?

Thank You
FRank

jumpyowl
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Welcome, Frank!

Post by jumpyowl »

I also had a sleep test around April 24. I even posted the results on this web site. Look it up because I go in detail about it. (my thread is entitled Self-diagnosed).

What the results of your sleep study show that you have a severe form of PLMD (periodic limb movement disorder). This usually goes hand in hand with RLS. Many people have both, RLS when they are awake (the one you described so well - do they go away with movement?) and PLM when asleep.

I also had a severe case of it and I only had 186 near arousals when you had over 200! :shock:

It is bad that you do not have stage 3 or especially 4 sleep and is probably the cause of most of your morbidity.

Why do you have to have another test? Did they take a polysomnograph of you (even if the guy did not know how to interpret it :roll: ) ?

Take a look at my thread on pages 2-3. (the last post on page 2 and more posts on page 3) I am sure you have RLS/PLMD! 8)

Another Frank, but really is
Jumpy Owl

Anonymous

Post by Anonymous »

Jumpy Owl
Thanks for the reply, I think you hit the nail on the head with the PLMD. I looked it up and it is exactly how my symptoms are. I was starting to get discouraged because I couldn't find an illness that I had all the symptoms of. Not that I want to have an illness, I just want to find out what's going on. The sensation in the legs, daytime sleepiness, movement of the arms, waking up shortly after going to sleep, frequently waking up.........., it all fits.

I had 217 PLM in 283 minutes, the first doctor did a complete sleep study, but he only deals with Apnea, since I didn't have any Apnea he had no clue what was wrong with me. He claims to be a sleep disorder physician but he isn't. He refered me to another doctor in Pittsburgh, this new doctor wanted me to have an MSLT and he said that the MSLT was difficult to read if I didn't have a sleep study the night before. So I got both Thursday night and Firday. He seems to think I have Narcolepsy, I'm sure I don't though. Although I did average less than 3 minutes to fall asleep during the 4 naps.

Do you know of any good websites that go into detail concerning diagnosis and treatment of PLMD? I will research this site today, seems like a great place.

Thanks again for your help.

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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I am surprised but it is possible.

Post by jumpyowl »

I am surprised that you were diagnosed Narcolepsy/Cataplexy(?). But then again I have not seen your somnogram. This is what Stanford University Narcolepsy Center says about that disorder:

Symptoms
The main symptoms of narcolepsy are excessive daytime sleepiness and abnormal REM sleep: Narcolepsy is not only a serious and common medical problem, it also offers basic sleep researchers a unique opportunity to gather new information on the central mechanisms regulating REM sleep and alertness. Since the 1960s it has been known that several of the disabling symptoms of narcolepsy, such as sleep paralysis, cataplexy and hypnagogic hallucinations, are pathological equivalents of REM sleep. In sleep paralysis, a frightening symptom considered to be an abnormal episode of REM sleep atonia, the patient suddenly finds himself unable to move for a few minutes, most often upon falling asleep or waking up. During hypnagogic hallucinations, patients experience dream-like auditory or visual hallucinations, while dozing or falling asleep. Cataplexy, a pathological equivalent of REM sleep atonia unique to narcolepsy, is a striking, sudden episode of muscle weakness triggered by emotions. Typically, the patient's knees buckle and may give way upon laughing, elation, surprise or anger. In other typical cataplectic attacks the head may drop or the jaw may become slack. In severe cases, the patient might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack.

Diagnosis
Narcolepsy can be diagnosed using specific medical procedures: the diagnosis of narcolepsy is usually easy if all the symptoms of the illness are present. More often, however, the symptoms of dissociated REM sleep such as cataplexy are mild, and a nocturnal polysomnogram, followed by the multiple sleep latency test (MSLT) is suggested. This test, performed at a sleep disorders clinic, will confirm the daytime sleepiness by showing a short sleep latency of usually less than 5 minutes, as well as an abnormally short latency prior to the first REM period (SOREMPs). Other causes of daytime sleepiness, such as sleep apnea or periodic leg movements, are also excluded by the nocturnal recordings.



Quote from quote:
..., however, the symptoms of dissociated REM sleep such as cataplexy are mild, and a nocturnal polysomnogram, followed by the multiple sleep latency test (MSLT) is suggested. This test, performed at a sleep disorders clinic, will confirm the daytime sleepiness by showing a short sleep latency of usually less than 5 minutes, as well as an abnormally short latency prior to the first REM period (SOREMPs). Other causes of daytime sleepiness, such as sleep apnea or periodic leg movements, are also excluded by the nocturnal recordings.


You apparently had these two tests just lately. How come your second doc did exclude the PLMD from your somnogram??? :roll: It looks like the first doctor knew only about sleep apnea, the second only about Narcolepsy. As they both missed PLMD!!!

I would like to see your test results. Did they give you a copy? You can see mine on my thread. But you could also e-mail me privately. If you feel comfortable with it.

According to the Stanford info the doc should be able to diagnose anything you have with fair certainty. They have all the data! :roll:

Let me know if this is the case. There is a new drug (orphan drug) which has been approved by the FDA for the treatment of narcolepsy. If you are sure you have narcolepsy, I can provide more info on that drug. (Interestingly the NIH website did not even mention it). It would be very helpful because it regulates your sleep at night and increases the stages 3 and 4.

You could have both!!! RLS and Narcolepsy. :idea: Now this is something apparently they have not considered yet. :?:

Let us discuss it a bit further. It is possible that relief is around the corner for you! :)
Jumpy Owl

Anonymous

Post by Anonymous »

Jumpyowl
I have not received the official results from the second sleep study or mslt yet, when I do I'll post the results of both. As far as the Narcolepsy, this is what he wanted to test/rule out with the mslt, he said many of my symptoms sounded like this could be the problem, but it was only conjecture on his part at the first office visit. Like I said earlier I averaged under 3 minutes to fall asleep, this confirms the daytime sleepiness, like the quote says, but I don't have the severe symptoms that are common with Narcolepsy.

He did not comment on the 217 periodic leg movements from my first sleep study, at my office visit, maybe he overlooked the results, he read it kind of fast. We'll see if I get the same type of results from the second study.

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
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Dear Frank

Post by jumpyowl »

As I wrote:
[It looks like the first doctor knew only about sleep apnea, the second only about Narcolepsy. As they both missed PLMD!!!


It is a bit surprising but it really looks like they each specialized in one sleep disorder. Let see what he says next visit. You may need to find an RLS doctor :cry:

Why did he not take some time with you? Was he in too much of a hurry after making a huge fee with those two tests?

Thank you for sharing. I am really looking forward to looking at the data. It may be to your advantage to get the results before the next visit. :wink:
Jumpy Owl

Anonymous

Post by Anonymous »

Today there was a message on my answering machine saying that the doctor "thinks I might have some Narcolepsy". I can't get to see him for at least 3 weeks so I don't know what his rationale is. I have spent the afternoon researching Narcolepsy and I still don't think that is my problem.
The symptoms I have:
1.) severe EDS
2.) distrubed night sleep
3.) fell asleep in under 3 min average during MSLT
4.) Vivid dreams during MSLT, (abnormal REM?)
The symptoms I don't have:
1.) Cataplexy
2.) Sleep Paralysis
3.) Hallucinations falling/waking from sleep, although I do have very vivid dreams at times falling asleep or while taking a short nap, <30 min.

Now I'm really confused. :shock:

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Frank, I started a separate thread for this!

Post by jumpyowl »

please switch over, on General Topics Forum (RLS/PLMD and Narcolepsy/Cataplexy).

I am transferring over all the information including your post of today.

I bet you have not read my answers to you either which is under the other topic.
Jumpy Owl

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