LEES APPOINTMENT : Hope nobody minds... - Restless Legs Syn...

Restless Legs Syndrome

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LEES APPOINTMENT

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Hope nobody minds but I am cruising and just seeing what's going on. A quick post if you don't mind regarding Lees appointment. She has been diagnosed by the specialist as having a RLS after reading her QOL statement. Before he prescribes any medications he wants to see for himself, so she's having a sleep study next week? In the meantime, he has taken her off Temazepam to see how she copes without it. She's absolutely beside herself with happiness.

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10 Replies
LotteM profile image
LotteM

Way to go. Well done. By doc, by Lee and by you informing and preparing her.

I'm glad it was a beneficial appointment for her!

Neil46 profile image
Neil46

Was that one of your "understatements"?

in reply to Neil46

Understatement? .... Did you happen to mean quality of life statement?

If you did happen to mean 'Quality of Life' Statement, then I have no problem in explaining it to you.

It is a document that one prepares, usually containing the pertinent information and evidence of your disease, which is specifically intended to be presented to your specialist, to assist with his diagnosis.

As for this instance, I will describe my own QOL statement as an example.

The document includes the detailing of how RLS has affected (personally, a more apt word, I would consider to be somewhat more descriptive would indeed be 'imploded' on your life.

How it has affected your personality, your health, your finances, your sanity! The effect that its had on your working life, on your relationships etc etc. I also included my personal description of my symptoms of RLS.

It may also include the meds that you are currently taking ... how they are improving your quality of life. It should also include the meds that you took in the past, if they were indeed successful for awhile, but if their success did, in fact, eventually wane, after a while, which, in hindsight, is rather a insignificant assumption, (when you take into consideration, as why would you cease taking it if it was still working .... duh!)

What meds did you replace them with, and how did the replacement meds improve your situation etc etc.

Also an explanation describing any side effects that were encountered would be helpful information.

I seriously hope that my explanation has answered your query to your satisfaction.

in reply to Neil46

I just re-read your reply to my post again. Was my reply what you expected or did I hastely go into overdrive?

(FYI .... I am not coming back to apologise) 😉

Neil46 profile image
Neil46 in reply to

No, thank you for the info re QOL statement. I did not know what that was and it seems a good tool in explaining the pain of RLS, so a major step forward. My response was to the withdrawal of Temazepam. I assumed that her "happiness" was meant to be ironic because she didn't want that.

Sorry if I misunderstood and I hope the sleep study will put her on the road to relief. I have RLS and PLMD and sometimes take a friend's Temazepam to get a night's sleep, that's probably why I read it like that.

Kind Regards

Neil

No .... Lees happiness is due to excitement. Like most of us, she thought you must have been going insane and was overjoyed with the diagnosis that she actually had a relatable illness.

I also have RLS, PLMD and insomnia and I've been taking Temazepam for 30+ years and it still works.

in reply to

I am very happy for Lee! (umm....well, you know what I mean)

I'm sure you're prepping her for her sleep study. Way to go for helping her!!!

BTW, here in Norway, you get an extra piece of "equipment" for in-lab sleep studies that you don't get in the States. You get all bandaged up on the head (and I mean completely covering the head) to prevent the electrodes from falling off. I was not prepared for this when I had my first polysomnography done(here in Norway) earlier this year, so I was utterly embarrassed. Is it practice there to be bandaged up like a patient just out of brain surgery? I hope not! To make matters worse, I was "done up" on one floor and had my study done on another floor, so they expected me to walk through the hospital looking like I was! I told them I wouldn't do that without the technician with me.

(Damn, I'm so sorry. You probably did not want to know all that! Obviously, I'm still sensitive about that experience -- I mean, why else would I go on like this to the words "sleep study")

Please let her know we're thinking about her!

Neil46 profile image
Neil46 in reply to

Some nights I do think I am going insane! But even then I would never wish any pain, let alone the curse of RLS, on anyone. I apologise wholeheartedly to Lee for making her think that.

Neil

Will do

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