PLEASE READ-PLEASE READ-PLEASE READ

[jumpyowl]

It is 2 am so my brain is not functioning well. I am not sure what your question is Jan?. If I am answering the wrong thing, let me know.

You should have gotten a report on your test in the mail.

If your oxygen uptake was below 95% but above 90% let us say (she did not reveal you the range, my range was 94-98%, which means no apnea) then you probably do not have apnea to the degree that requires treatment.

What I said about reliability is just the nature of the beast. It was almost expected and the phenomenon is similar to the white coat hypertension.

The doctor played it carefully. And he was right. Stress can be caused by RLS but also by many aspects of our own life. It can aggravate RLS but it may be able to trigger it, in a sense "to cause it." We just do not know! We also do not know exactly how to treat RLS.

My technician was not only well trained but he (by the name Jan - pronounced Yahn) was also experienced and had a thirst for knowledge. It was quite instructive to talk with him. You did right by accepting the courtesy of the technician.

I am not sure I agree with you that she should not have done so. It, of course, depends on the policy of the clinic, but she was ethical and morally right in my humble opinion.

That is all I feel like I am qualified to comment. Except that Nadia and Sara are probably right in that they would not get the full benefit of a sleep test and it is too dear to try it several times.

[jan3213]

Jumpy--it's Jan

I'm not sure I HAD a question Jumpy, so I don't think your brain function is a problem!! I was just commenting on how I thought it was interesting that you all seemed to think a second sleep study was a "given", but my doctor didn't even mention a second study to me. Thanks for telling me that I wasn't wrong in listening to the technician. I always felt that I wasn't, but was made to feel otherwise. But, I thought it strange that if I WAS WRONG, and she SHOULD NOT have told me, why was she still employed by him? And, no I did not receive a copy of the report. Never have. I had to call his office to find out the results! I also never felt like I had sleep apnea. Anyway, still have trouble sleeping. I know stress plays a big part in how RLS effects us. Believe me!!! And, sometimes you just can't control things around you that cause stress--darn it!!! Even your reaction to those events aren't easily controlled! I wish I had a built-in button I could just push that would turn everything on or off so I COULD sleep. However, it just doesn't happen that way. A trip to my neuro is forthcoming and I'm sure a change in meds as well. He's in St. Louis. I'm sorry, I digress. I really found your post interesting, Jumpy. I was treated like I did something wrong (my husband, who was with me, would gladly verify as he was extremely angry over the whole thing). Thanks for replying!

Jan

[sugbrendas]

WOW,lots to catch up on!
It's a wonderful day my friends. No headache and some energy
I took a pain pill yesterday,it lightened my headache some.
Last night I got to thnking,I obviously did sleep. What if the new antideppressant is making me foggy. SOOOOO,last night I ommited the Deseryl(sp) and took 2 Ultram and 2 flexeril's with my Klonopin and woke up with NO HEADACHE and some energy. I'm almost giddy i'm so excited!

So about the Apnea.Yes this center is financed by a bipap Co.,it was posted right on the wall.
There were 4 sleep studies,2 tech's..I could hear them talking and the radio playing.
She said my o2 dropped in the 60's and then went back up to the 80's.
I was playing with it before she came in- before the study.It had my baseline at 92-93.My baseline has always been 97-98..I don't think the thing was accurate and it was too loose on my finger.
WHen I worked GI and helped with scoping i would play with the Pulse ox.

Well,about the mouth open vs closed,she said the air has to pass the tongue(which may block the throat),breathing through the nose is straight on down.
I know when I did the gi work we would sedate them and when their sats fell we would tell them to breathe through their nose and out through the mouth.So when I played with it -thats what I would do and it does bring it up cause I could bring mine up to 100 for a second or 2 with the one at work.

Now I don't know if this has anything to do with the apnea part but the am of my test I ate a sugar free turnover and a glass of Carb Countdown milk and withing an hour I had loose stools and terrible reflux,it burned my throat and came out of my nose even(gross,i know)..This was all day inspite of my Prilosec and Pepto Bismol.So I go thinking,I was still coughing some from choking on that acid..My throat was sore and felt really irritated..I was wondering if my throat had gotten swollen and did that.I don't know.
The source of my stomach distress turned out to be the SF tunovers I bought..Steve ate one yesterday and the same thing happened to him and he'sat work now and still having problems. Must have bee e-coli cause it happens so fast.

I think everyone should have a baseline o2 sat at least every year.Dr's just don't do that much but where I worked we had to..Just in case theres a problem you know whats normal for that person..Maybe more important for us RLS's..

Well,gonna go get some work done hoping my "ballon doesn't burst"!
No headach,YEAH!!!!

[sugbrendas]

No headache!! I just love this.And i am so sorry if I appear to insensitive but it's been months since I felt like this.
Anyway,I called my KP pharmacy and low and behold I have a refill on the Trazadone from last year.(the flu shot/muscle pain thing)..I told her to fill it..I'm gonna figure this thing out and when I do I really hope me Doc is receptive..Can you believe I forgot I had this refill!!! There goes "CRS".

FYi,my tech wouldn't give me anymore info,said the Dr would have to.
another Fyi; anyone who really really knows me,know I don't get real happy or real sad often,i'm pretty even tempered..I know you guys can relate to how i'm feeling.

[jumpyowl]

for the information on the tongue blocking the airways. Sure makes sense. But when you exhale, then it opens like a valve.

What are you going to do about Deseryl? One patient I heard about were given 5 different antidepressants, consecutively for RLS and was getting worse with everyone of them. By the way the following antidepressants decrease dopamine level in the brain:

Elavil (Amitriptyline)
Sinequan (Doxepin)
Effexor (Venlafaxine)
Nardil (Pheneizine)
Parnate (Tranylcypromine)
Paxil (Paroxetine)
Prozac (Fluoxetine)
Zoloft (Sertraline)
Celexa (Citalopram)
Desyrel (Trazadone)

The following do not affect dopamine levels:

Serzone (Nefazodone)
Wellbutrin/Zyban (Bupropion)
Remeron (Mirtazapine)

I am glad your headache is gone for the time being.

[sugbrendas]

OH MY GOD ,jumpy i am so glad you posted that the medicine I requested was the Deseryl I'm trying to stay away from..Thank you thank you!
It's Tramadol I wanted and I called them as soon as I read your message and it's expiRed-been over a year so they put in a request to my Dr.
We'll see now if he authorizes it.
THANK YOU!!!

[sugbrendas]

About the tongue,both my dh and brother have this problem..
My brothers had several surgery's to cut away excess fatty loose tissue around his airway..Exhaling is the only thing they do right but then everything closes.Steve(dh) used to go over 10 seconds between breaths and when he took a breathe it was wheezing..I was so scared for him.
Both he and brother have massive neck sizes though neither is consider THAT overweight.

[jumpyowl]

********HONOR ROLL - THIRD PART (>100)********


0___10___20____30____40___50____60___70___80____90___100__
.........!.........!..........!.........!.........!.........!.........!.........!.........!.........!........

The 108th and no longer holding breath >>>>>>>>>>>>>>>>>>>>


101. DDAVP

102. EDITH-H

103. IRA

104. JOYCE-O

105. MRA

106. POOHBEAR

107. TIMOTHY

108. THINKER

[becat]

Well a belated CONGRATS Jumpyowl........I love babies, and look forward to grandchildren... You must be so proud. May all be well and the blessing flow like a river.
Congrats as well on the questionaires.......Nadia great job. Jan and Sole thank you for helping email all of the RLS.ORG members and putting the word out. I know your fingers got a bit numb. Sara thank you for rounding up takers for this as well. It's just amazing, it seemed like such a challenge, but this group knows how to work that. Could we be more proud? See what we dream can come true. WOW that is awesome.
Love to you all.

[sardsy75]

It's just amazing, it seemed like such a challenge, but this group knows how to work that.

Ahhhh .... there ain't nuthin like a good old fashioned challenge to take one's mind off the thought of chopping one's legs off at the neck!!!

[jumpyowl]

It is that bad, is it not?

Then you have nothing to worry about, Nadia, since you have had plenty of challenges lately. And you have taken them head on!

Hope you feel better soon!

Your caring friend

[jan3213]

It's Jan

Hey girl!! I KNOW JUST HOW YOU FEEL! I've asked my husband several times lately, "Just cut my legs off, P-L-E-A-S-E!!!!!!!!!"

Hang in there, honey!! Everytime I think about MY legs, I think about what YOU go through! Ain't it fun?..................... As bad as mine have been, and believe me, they have been BAD, I know YOU have suffered and suffered and suffered, so you are MY inspiration.

Here's hoping you feel much better soon!!

Fondly,

Jan

[sugbrendas]

Nadia,I read where you're new to RLS..It does get easier but never without challenges along the way..Hopefully you'll find something that works for you,take each precious moment when that occurs and relish it.
My thoughts are there with you.((hugs))

[jumpyowl]

Well, you have probably seen this quote above:

********HONOR ROLL - THIRD PART (>100)********


0___10___20____30____40___50____60___70___80____90___100__
.........!.........!..........!.........!.........!.........!.........!.........!.........!.........!........

The 108th and no longer holding breath >>>>>>>>>>>>>>>>>>>>


101. DDAVP

102. EDITH-H

103. IRA

104. JOYCE-O

105. MRA

106. POOHBEAR

107. TIMOTHY

108. THINKER

I f you are wondering why the number of participants is not increasing because I stopped taking any more questionnaires. But only temporarily.
I asked people still wanting to contribute to hold off a few days until further developments.

Why? because while working on the survey I started to realize the enormous importance of this study now that we have reached and actually surpassed 100. Who could have foreseen this?

To put this in perspective: the much celebrated multicenter and multinational (also retrospective) RST study with 182 primary care doctors participating examined the records of 23,000 general patients and selected 551, as potential RLS patients, for futher study.

These patients claimed that they had symptoms at least twice a week and the quality of their life had been adversely affected.

Now this is an enormous study which probably cost millions of dollars. Most published studies include around ten patients.

Now to see the importance of Our Research Project, consider that we have already have 100 patients participating. And surely will be more coming after the change we are making (see below). And we have done it without a single cent donation from anybody!

The additional advantage of our group project that it takes advantage of the fantastic (and highly unusual) helping, supportive, and frank atmosphere we have developed on this discussion board since March of this year. This makes patients open up and reveal their whole story. The one their physicians and the drug companies never hear.

So we decided to improve our questionnaire to make it more informative and also much easier to complete. We put into these changes what we learned form the first hundred participants of the survey as well as what I learned since I initiated this project.

We made a new computer-friendly questionnaire which is now 12 pages long. Thrice longer than the previous one. But now it is arranged professionally, and can be placed on the internet where patients will be able to complete it electronically.

Many of you have contributed to this evolution. I just want to mention three names. One is, of course, Nadia, or Sardsy75, who contributed a large part of the final form. With her CPA background she has a much more organized mind that I have. Also computer savvy which I am not. The other person, Gloria, was a surprise.

Gloria is one of my daughters, who is living with us! She has been suffering from a severe form of fibromyalgia for over ten years now. She had to drop out of the university in her junior year, where she was on the dean's honor list, because of FM.

I asked her to help with the forms and she took to it like duck to water. Not only has she been an extremely hard worker, but she spent a lot of time considering each patient, reading their additional comments, in view of her own experience. She came up with some truly amazing insight, which I myself did not even see. Now I consider her a major contributor even though she does not seem to have RLS.

This new questionnaire is called LIFE WITH RLS. It will be posted on my son's website. He is the third one. Tom is a biochemist and has a master's in computer science. He also labors free like all of us. And this is something some people actually hold against us. That we have no authority and there is no official agency behind us, and that we have no financial support behind us. Basically, that we are amateurs.

Perhaps they are right but I do not think so! Some of the most useful achievements in history started from grass root efforts.

I will let you know when the LIFE WITH RLS questionnaire will be published and available on the Internet. Hopefully in a few days.

I also have an idea to form a cyber support group, as we do not live close to each other. I will check with RLS so we can continue using their Discussion Board. Let me know any idea you have on all this.

Now it is 4 am so I had better head to bed.

[sardsy75]

Dang it Jumpy now you've gone and made me blush.

Oh well, so much for staying outta the spotlight on this one

Now to see the importance of Our Research Project, consider that we have already have 100 patients participating. And surely will be more coming after the change we are making (see below). And we have done it without a single cent donation from anybody!

This new questionnaire is called LIFE WITH RLS. It will be posted on my son's website. He is the third one... ...He also labors free like all of us. And this is something some people actually hold against us. That we have no authority and there is no official agency behind us, and that we have no financial support behind us. Basically, that we are amateurs.

Perhaps they are right but I do not think so! Some of the most useful achievements in history started from grass root efforts.

What you are referring to above Jumpy, could be classed as a case of "Tall Poppy Syndrome" ... those who see others taking the lead or being recognised for their efforts do their darndest best to cut them down ... more often than not out of pure jealousy. Those of us who have been working "behind the scenes" with this project, including myself, have copped very negative beatings, often from those who are supposed supporters and even leaders of RLS Support Groups. I'd just like to clarify something about me ... people who have personally worked with me know that if I want information and/or support for something that I truely believe in (be it for work purposes or social purposes such as this project) , then I'll go get it. Sometimes this means treading on sensitive toes, which requires a little bit of diplomacy and tact, but it has made me more friends and opened more doors for me not only in this "family" in here, but in my own home town, and now on a National scale as well.

Our collective "treading on toes" success has made my own resolve a LOT stronger, hence the major surgery on the questionnaire (those sleepless nights lately have come in handy!); and overall, I believe has strengthened and will continue to strengthen us even more as a group.

I have my proverbial "foot in the door" with RLS Australia and I intend to use this to not only my advantage, but to OUR advantage. How? RLS Australia (a sub group of Sleep Disorders Australia) is still only a fledgling group, AND is run by a group not unlike us ... VOLUNTEERS, so there has been relatively little exposure to the "sway" of the medical heavyweights so to speak.

However, having said that, I am keeping in mind the reason that we HAVE received so many emotion-filled responses is purely because we AREN'T a group of doctors/researchers doing it simply because we're backed by financial support. The last thing I want to do is put our project in jeopardy, so will be treading very carefully when it comes to disclosing information about our project.

There is still a LOT of wind in the sails of this project ... let's make the most of it!!