PLEASE READ-PLEASE READ-PLEASE READ

For everything and anything else not covered in the other WED/RLS sections.
jumpyowl
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PLEASE READ-PLEASE READ-PLEASE READ

Postby jumpyowl » Thu Aug 26, 2004 5:18 pm

The questionnaire. It is finally here. Please print it out, complete it (please use block letters) and mail it to:

Frank J. Holly
335 County Road 1995
Yantis, TX 75497

Also let me know if you want to make changes or additions. I will do them in an amendment.


IDEA: it is better to work from the word document or another type of attachment. . (Some people' software cannot read a Word Document. Those should request the questionnaire in a rich text format.) So please write me with your e-mail address, the format you want and I will send you the questionnaire as an attachment..

These attachments can be completed by either using bold or underlining the corresponding words, and typing in answers, or explanations in a different color.

Grateful thanks to those who already returned the questionnaire completed !!!

A work like this which that is based on the personal, true experiences of patients afflicted with a little known disorder (which usually never reaches the doctors' ears) can be quite valuable. even unique in its importance PROVIDED that the questions are carefully and pointedly constructed AND that the number of participants is large. This N is all important. And, of course, the sincerity and validity of the answers.

If we could get 100 people involved that would be fantastic. Even 50 would be worthwhile to present. 10 I am afraid will not do it.

Both Nadia and Becat came up with excellent ideas how to increase the number. I do not care how much work is involved. Here we have to strive for as large a number as possible because the conclusions to be made will be more valid and more listened to by the medical profession.
Last edited by jumpyowl on Sat Aug 28, 2004 9:19 am, edited 5 times in total.
Jumpy Owl

jumpyowl
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QUESTIONNAIRE

Postby jumpyowl » Thu Aug 26, 2004 5:43 pm

**********SAMPLE ONLY (not updated)**********
request a word (.doc) or .rtf document from JumpyOwl



----------QUESTIONNAIRE:----------

HANDLE:
Name: (optional):
Gender and age:
Location (city, state):


SYMPTOMS:

PARESTHESIA (circle or underline)

Type of sensation: formicative****crawly****creepy****pins& needles****ripples/bubbles(running through muscles randomly)

Location: legs****arms****lower back****neck****other: (describe): ………………………………………………

PAIN (circle)

Present: ***Yes****No****intermittent****chronic***(circle)

Type:
burning****stabbing****pulsating****deep ache

ceased by movement? *****Yes*****No

Location: legs****feet****arms****lower back****neck****ears****head (circle relevant sites)
other: (describe): ………………………………………………

OTHER HEALTH PROBLEMS (possibly related to RLS- low dopamine levels):

Periodic Limb Movement:

Arousals – Near arousals_______Frequency:…………….per night

Length of slow wave sleep (stages 4&5): ………………minutes per night

Insomnia: ***on-set*****maintenance***** average sleep per night:…………hrs.

Hormonal deficiency: Thyroid (hypo, hyper) Ovaries (hysterectomy, menopause)

MORBIDITY: (circle all that applies):

Fatigue****Narcolepsy****Pain****Paresthesia**** Depression****Insomia ( average hours of sleep per night)

Other: ………………………………………..................................………


HEALTH PROBLEMS OTHER THAN RLS:

Sleep Apnea ****Yes****No****Do Not Know

Narcolepsy/Cataplexy****Yes****No****Do Not Know

Fibromyalgia****Yes****No****Do Not Know

Chronic Fatigue Syndrome: Yes****No****Do Not Know

Drug/Alcohol dependency: Never****In the Past****Present

Other:…………………………………………………………………………………

DIAGNOSIS:

Age when RLS was first diagnosed: ……………………….

Age (in retrospect) when the unrecognized symptoms appeared:

Who diagnosed RLS: self doctor family member friend other

Number of doctors visited prior to correct diagnosis: ………Specialty (last one)................................

Diagnostic tests conducted: (check which apply) :

o Polysomnography (sleep test):

o Nerve conduction studies

o Others (please name or describe) …………………………………………

…………………………………………………………………………….

If self-diagnosed, did your family doctor agree: Yes No Did other doctor?.................................specialty (circle)


SEVERITY OF DISEASE (circle one):___mild___daily___refractory


TREATMENT:

MEDICATIONS IN THE PAST

Nonpharmaceutical: iron supplement, potassium magnesium vitamin B12 (circle as many as relevant), other …………………………………………………

exercise, massage, pantyhose, hot bath, other…………………..

Pharmaceutical (type): dopamine agonist ***analgesic***sedative***anticonvulsive

Drugs prescribed in the past (in chronological order): indicate efficacy
(if dose was titrated upwards indicate range)

1……………………………………dose:………

side effects:……………………... Felt: better****same****worse (circle)

2. …………………………………..dose………

side effects………………………… Felt: better****same****worse (circle)


3.……………………………….dose………

side effects………………………….. Felt: better****same****worse (circle)


4.………………………………….................…dose:……...

side effects………………………….... Felt: better****same****worse
(circle)

Have You Experienced the Following:
**********Augmentation*********Rebound effect

How soon? Less than one month ****6 - 12 months****after 2 years
****************Which medications: ……………………………………………


Were you ever on antidepressant: Yes*****No If yes which ones:

...........................................................................................


PRESENT MEDICATIONS:


1……………………………………dose:………

side effects:…………………… Feel: better****same****worse
(circle)

2. …………………………………..dose………

side effects…………………………Feel: better****same****worse (circle)


3. ...………………………………….dose………

side effects………………………… Feel: better****same****worse (circle)


4.... ……………………………………dose:……...

side effects………………………… Feel: better****same****worse (circle)


Are you on antidepressant: Yes****No If yes which one:…………………....

.....................................................................................

DID YOUR DOCTOR REFUSE TO PRESCRIBE MEDICATION?
(known to be effective in RLS as off label drug use)

No*****Yes


OTHER CHANGES:

Change in body weight:……………………………………..(in pounds)

Change in vital signs (e.g. cardiac arrhythmia)…………………………

Change in sleeping habits:…………………………………………………….

QUALITY OF LIFE/MORBIDITY

Major**********Moderate**********Slight

FAMILIAL CONNECTIONS (blood relatives diagnosed with or suspected having RLS):

Grandmother Grandfather Father Mother Brothers Sisters Sons Daughters
(circle which ones)[/b]
Last edited by jumpyowl on Sun Aug 29, 2004 1:04 pm, edited 4 times in total.
Jumpy Owl

jumpyowl
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WAIT A MINUTE!

Postby jumpyowl » Thu Aug 26, 2004 6:43 pm

If I have your e-mail I will attach a word document and send the questionnaire by e-mail. It is much better formatted.

If you do not get it in the next 30 minutes, please send me your e-mail address.

Mine is fjholly@dry-eye-institute.org
Jumpy Owl

becat
Posts: 2842
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ADDTION TO

Postby becat » Thu Aug 26, 2004 6:55 pm

n/a
Last edited by becat on Mon Dec 28, 2009 1:51 am, edited 2 times in total.

jumpyowl
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PLEASE

Postby jumpyowl » Thu Aug 26, 2004 11:54 pm

I hope you all are working on the questionnaire. Remember that we need everybody to contribute otherwise the survey will be biased toward those who have the severest form of the disease. :cry:
Jumpy Owl

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jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

GREAT JOB JUMPY AND BECAT!!!

Postby jan3213 » Fri Aug 27, 2004 2:38 am

This is Jan

I think we all owe Jumpy and Becat a BIG THANK YOU for their hard work. Jumpy, you really worked hard on that questionnaire. Please, EVERYONE, don't let him down. It doesn't take long to fill the form out, and it may do soooo much good for all of us and those of "us" to follow!!! And Becat, thank YOU too. What a great idea you had to personalize our individual situations! Please support both of these fine people!!!

Thank you both!!

Jan
No one is alone who had friends.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

bump

Postby becat » Sat Aug 28, 2004 5:21 am

bump

jumpyowl
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Hello, everybody

Postby jumpyowl » Sat Aug 28, 2004 10:31 am

and a bump to you, too becat :)

But seriously:

I received an e-mail from a lady in the Netherlands who had this to say (in excellent English by the way):

OK JumpyOwl,

If I, as a dutch woman, am allowed to take part, my e-mailaddress is
as follows XXXXXXXXXXXXXXXX

I just filled out a questionnaire for the dutch patients-society because of their 5th birthday, but it isn't half as good as yours!

Thank you for what you are doing.

Full name


My reply:

Are you allowed??? You are most welcome!!!

Can you read Word documents? If not I can send it to you in rich text. Just let me know.

Thank you for the compliment. :-)

Dr. Holly (aka JumpyOwl)


As she was having computer problems her completed questionnaire is in the mail.

Thank God for caring, devoted people!
Jumpy Owl

jumpyowl
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Location: Yantis, TX
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Dear Becat:

Postby jumpyowl » Sat Aug 28, 2004 11:05 am

Dear Becat:

Thank you for your offer of assist. Please do and use my e-mail address
so they can ask questions, etc.

Nadia and I are trying to publicize this on other web sites.

Here are the e-mail addresses to which I have already sent the questionnaire:

Collaborators (handles/where in process/locations):

Becat/Received/Plano, TX

Claradragon/Received/Kent, England

Jan3213/Received/Missouri

Heron/Pending/Alaska

Pat_Autin/Pending/???

Jjalgera/In he mail/The Netherlands

Sardsky75/Pending/Queensland, Australia

I sent these people shown below an e-mail with the questionnaire attached:

Alabamageorge
barefootsailor
Blsuper
Brittbray
Chasinsmoke
Davidworldtravel
edergn
Ems2m
Ex_ra_vet
Kanie40
Kimh
Mygod
Pdlandry
Romy
Sbcloud
SEED1948
Stefaniewray
williaer

Altogether twenty-five so far…………….
Jumpy Owl

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sardsy75
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Location: Queensland, Australia
Contact:

The call has gone out!

Postby sardsy75 » Sat Aug 28, 2004 12:07 pm

I have sent a blanket "SOS" email to seven RLS Support Groups on Yahoo Groups asking for assistance with our project.

Collectively this will reach approximately 1200 - 1400 (allowing for cross-memberships) RLS Sufferers around the world, and if we get just 10% of our fellow sufferers to support us, it will boost our project and our data significantly!

Cross your fingers and hope that RLS Sufferers around the world hear our call for help!!



(P.S. Jumpy, I haven't forgotten to fill in mine, i've got a BIG reminder attached to the side of my computer screen; i've been a little sidetracked this week with friends, work and now a nasty case of "tonsilless tonsilitis"; I will complete it ASAP)
Last edited by sardsy75 on Sat Aug 28, 2004 12:10 pm, edited 1 time in total.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

User avatar
jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Jumpy - It's Jan

Postby jan3213 » Sat Aug 28, 2004 12:10 pm

Hey

Don't know if it's important IN YOUR POST, but you have me from Missouri, and I'm from Illinois. It's correct on the questionnaire, so that's okay. It probably doesn't matter in your post, but thought I'd mention it.

Jan
No one is alone who had friends.

User avatar
jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

It's Jan again

Postby jan3213 » Sat Aug 28, 2004 12:11 pm

I don't know how I got two posts alike, so I'm editing the second one to thank NADIA. Nadia, I didn't know you were involved at first, but I also want TO THANK YOU for your hard work too. I appreciate ALL THREE OF YOU so much. I just hope everyone fills out the questionnaires and gets them to Jumpy because I KNOW the information will help us all so much!! After reading some of the latest posts about the children who have RLS and knowing some of you who had it in your childhood, SOMETHING HAS TO BE DONE. Even though I have it, and it is extremely painful, others suffer so much more (Nadia, I think of you so often). PLEASE HELP EVERYONE!

Jan
Last edited by jan3213 on Sat Aug 28, 2004 2:12 pm, edited 1 time in total.
No one is alone who had friends.

jumpyowl
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Fantastic job!

Postby jumpyowl » Sat Aug 28, 2004 12:33 pm

Nadia, after I wrote to you (and checked my yahoo mail - 325 iin the inbox and 1200 in the spam box) I went to the web site of the yahoo groups and big as life there was your post calling for help to everyone around the world!!! I was speechless (more like breathless).

I read your expose' and it is extremely well written. {The only thing I regret is that one word I forgot to delete in mine (you quoted me) "which that" - the "that" is superfluous. which is my fault and clearly minor.}

I could not write one attention getter like that in a million years. Thank you thank you and thank you...

So forget the e-mail I wrote you. It all happened in about 10 minutes time interval. After that I went back to my yahoo mail and there was your post by that time. Such a serendipity: It is really great. :D

I only slept three hours last night as my RLS took a turn for the worse. But I just did not have a chance to post in my diary. Just in time for completing my questionnaire, this will make it more interesting.

The yahoo readers will probably wonder what an ophthalmology guy know about RLS? But as an RLS victim I have to know something about it, right?

I am trying to reach Ruby, but she has not posted lately. She was the one who greeted me first, and you were the second. Sort of like godparents. :wink:

I am so encouraged that now we shall probably pass the 100 mark. It should be a good sound contribution!!! 8)
Jumpy Owl

jumpyowl
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Missouri, it is close but

Postby jumpyowl » Sat Aug 28, 2004 12:40 pm

clearly wrong.

Sorry Jan, I must have had a blind spot when I put that list together. Of course, I am well aware that you live in the same state where my youngest son lives (just yesterday he accepted another position which will hopefully pay a salary).

I do not know why I put down Missouri. Perhaps I was wondering what has happend to Ruby, she lives in Missouri. Since this is a rough, temporary list, I hope that no harm has been done.

I liked your questionnaire! We are still under ten but hopefully it will change!
Jumpy Owl

claradragon
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Thankyou

Postby claradragon » Sat Aug 28, 2004 1:47 pm

sardsy75 wrote: i've been a little sidetracked this week with friends, work and now a nasty case of "tonsilless tonsilitis"


One of the doctors in my past was suprised when I told him my tonsils had been removed and he'd just been looking down my throat!!! I've had tonsilless tonsillitis on many occasions and it's not nice...Hope you feel better soon.

Jumpy,Nadia and Becat...I just wanted to add my thanks for this project to get doctors to listen to us.Thankyou thankyou thankyou

Claradragon
My bio is on pg1/new to rls/new members and current members please help.My diary is under new to rls/is there light at the end of the tunnel?


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