RLS survey

[vreijs]

Hello RLS,

I filled in the survey to see if I have RLS (http://www.rls.org/wed-rls-diagnostic-tool). And according to the survey; I have no RLS (see attached). But I am wondering why I don't have it?
If I look at the essential diagostic criteria for RLS (http://www.rls.org/about-rls-wed/diagnosis ), I look to have it. Why does my survey results tell different, can you help?
All the best,

Victor

[Polar Bear]

I have looked at your attached completed form and would say that you have RLS/WED. I don't understand how the result comes up as positional.

Perhaps someone else will see something that I am missing and will be interested to see the opinions of others.

[ViewsAskew]

My guess is that a few answers kick it out so a doctor could ask more questions. Almost all of your questions are consistent with WED, except one.

To question 6, you answered that it's worst in morning and night. RLS is always worst at night. For some people it is bad in the morning, but then it would also be as bad in the afternoon, and would be worst at night. To be as bad in the morning as at night, a doctor might want to find out if there is a second condition that appears as RLS/WED, but is actually different.

That's my best guess.

If I were you, I'd email the form and your question to the Foundation staff. They can forward it to one of the doctors who advises the Foundation. They can be reached at info@willis-ekbom.org.

[cornelia]

One of the supporting clinical features for a RLS diagnosis is the question whether your parents or siblings have RLS. Do you have family with RLS?

Corrie

[vreijs]

To question 6, you answered that it's worst in morning and night. RLS is always worst at night. For some people it is bad in the morning, but then it would also be as bad in the afternoon, and would be worst at night. To be as bad in the morning as at night, a doctor might want to find out if there is a second condition that appears as RLS/WED, but is actually different.

For me the night is the worst. but in the morning I also can't sometimes go back to sleep due to RLS. Luckily I can get up and start my breakfast...

If I were you, I'd email the form and your question to the Foundation staff. They can forward it to one of the doctors who advises the Foundation. They can be reached at info@willis-ekbom.org.

I had done that but then saw that my attachement to them wa n ot correct, so I though that they would also read this forum... Ok, I wwil resent it to them.

All the best,


Victor

[vreijs]

One of the supporting clinical features for a RLS diagnosis is the question whether your parents or siblings have RLS. Do you have family with RLS?

Interestign, as this criterium is not part of the RLS-organisation diagnostic tool. By the way, I don't know if it is indeed in the family. I never talked about my condition, but I will do this indeed soon. Thanks.

All the best,


Victor

[ViewsAskew]

To question 6, you answered that it's worst in morning and night. RLS is always worst at night. For some people it is bad in the morning, but then it would also be as bad in the afternoon, and would be worst at night. To be as bad in the morning as at night, a doctor might want to find out if there is a second condition that appears as RLS/WED, but is actually different.

For me the night is the worst. but in the morning I also can't sometimes go back to sleep due to RLS. Luckily I can get up and start my breakfast...

If I were you, I'd email the form and your question to the Foundation staff. They can forward it to one of the doctors who advises the Foundation. They can be reached at info@willis-ekbom.org.

I had done that but then saw that my attachement to them wa n ot correct, so I though that they would also read this forum... Ok, I wwil resent it to them.

All the best,


Victor

I'll be interested in hearing their response.

[cornelia]

It is remarkable that your worst symptoms are in the morning. However: the key criterium for RLS is that you have the urge to move and that moving takes away the symptom. If it's there then it is very very likely that you have RLS.

Corrie

[vreijs]

I had done that but then saw that my attachement to them wa n ot correct, so I though that they would also read this forum... Ok, I wwil resent it to them.

I'll be interested in hearing their response.

I have not heard yet from RLS organisation...

All the best,


Victor

[vreijs]

One of the supporting clinical features for a RLS diagnosis is the question whether your parents or siblings have RLS. Do you have family with RLS?

I checked and my parents and sister dnn't have RLS.
All the best,
Victor

[ViewsAskew]

I had done that but then saw that my attachement to them wa n ot correct, so I though that they would also read this forum... Ok, I wwil resent it to them.

I'll be interested in hearing their response.

I have not heard yet from RLS organisation...

All the best,


Victor

They are overworked and underfunded . It's also a holiday weekend in the US where they work, putting them even more behind.

[badnights]

It is remarkable that your worst symptoms are in the morning.

Victor's worst symptoms are in the night, he said:

For me the night is the worst. but in the morning I also can't sometimes go back to sleep due to RLS. Luckily I can get up and start my breakfast...

Victor is defining morning as the period after midnight, whereas I think the authors of the questionnaire define it as the period including breakfast and before noon.

Victor all your answers are consistent with your having RLS/WED.

I think we may also bring this up with the Foundation, since I am concerned that the algorithm analyzing the answers is faulty.