had follow up with sleep doc today--update (sorry, long)

sharon1965 · Post by **sharon1965** » Tue Jul 17, 2007 10:46 am

...but i'm too upset to talk/type about it...suffice it to say, i got nowhere

Babette · Post by **Babette** » Tue Jul 17, 2007 11:05 am

Oh honey... I'm so sorry!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We're here for you. We'll get you all the illegal cross-border cpap supplies you can stand!!!!!!!!!!!!!!!!

HUGS,
B.

Snoredog · Post by **Snoredog** » Tue Jul 17, 2007 11:10 am

at some point you learn to save your copay and spend it on a nice dinner

sharon1965 · Post by **sharon1965** » Tue Jul 17, 2007 11:25 am

i don't have co-pay, i have provincial coverage and extended private coverage...what i didn't have was the sense to research what i'd need before going to the damn supplier

but a nice dinner still sounds good

NeedinZs · Post by **NeedinZs** » Tue Jul 17, 2007 11:49 am

I am so sorry!! What is the deal??
Is there any way of finding a good sleep doc that actually gives a $^#&,
I mean cares about people? In US or Canada? I'm not talking just credentials. I don't even have one yet, but feel discouraged to even start looking. I don't trust any referrals from my primary care doc. After dealing with her for 4 months of aggravation.. I've had it.

I hope you feel better soon!
I know you must be frustrated. Not at all to make light of your situation...but go have some CHOCOLATE, that will help for about 5 minutes, anyway.

Thank you for replying to my earlier post today.
Can't place what PLMD is??

sharon1965 · Post by **sharon1965** » Tue Jul 17, 2007 12:27 pm

needinzs said:

Can't place what PLMD is??

Periodic Limb Movement Disorder

needinzs said:

I am so sorry!! I hope you feel better soon!

feeling kinda sorry for myself right now, but thanks

NeedinZs · Post by **NeedinZs** » Tue Jul 17, 2007 1:32 pm

PLMD...Of course, I knew that. Just couldn't put it together.(Bit of a brain fog today.)

This is really off the subject of your original thread, but can you have RLS or PLMD without having sleep apnea? A relative of mine has terrible RLS, so much she's worn threads off her blanket.....but never had a sleep study, she also has diabetes. Just wondering......

Again...you have every reason to feel sorry for yourself today.
Maybe a little meditation in the fresh air will bring you back in balance.

That's where I'm headed!! Hopefully I don't fall asleep and fall off my chair!

kteague · Post by **kteague** » Tue Jul 17, 2007 1:46 pm

NeedinZs - yes one can have RLS and/or PLMD without having OSA. Those movements are different from the ones that accompany struggling to breath when having apnea events. Even between RLS and PLMD there's a difference. If your relative's movements are during sleep and rythmic (repetitive at regular intervals, can almost time them by the clock) that is characteristic of PLMD. RLS movements are usually more when awake and are random in response to uncomfortable sensations in the legs. If she has been diagnosed with RLS and is wearing out her blanket during sleep she may have both. (Those descriptions are general, not meant to be all inclusive.)

Sharon - ARGH! Makes me want to come up there and picket in front of your doctor's office! So sorry.

Kathy

sharon1965 · Post by **sharon1965** » Tue Jul 17, 2007 1:46 pm

yes, you can absolutely have rls or plmd without the osa component, but it's important to differentiate: rls is while you're awake and can interfere with falling asleep; plmd is, for the most part, inappropriate limb movement during sleep

there have been many discussions on these boards about non-presription rememdies for both, but i don't have the brain power to recall any of them right now (hyland's comes to mind as a brand though--leg calm? something like that) also taking a calcium/magnesium supplement at bedtime is supposed to help if it's mild...my iron was outrageously low, too, though, and my sleep doc is hoping that's the cause of the rls/plmd and has put me on prescription iron supps., otherwise it's possibly neurological, so obviously we're hoping the iron will address it...maybe your relative should have her ferritin levels checked...she should at least have bloodwork done--do you know if has she talked to her dr. about this? the arousals from plmd can cause extreme tiredness, too

the medication i'm on is still controversial and there are a lot of differing opinions on these boards about taking it... was reluctant and held off for months but became so desperate for rest that i caved...i know it's helping with the rls but the jury is still out on the plmd...but if we can get my ferritin up high enough i can try quitting the meds

thanks for the positive energy...raining here, though, so no outdoor activity and sadly, our air is almost never fresh ; the meditating part though? sounds good...i went for an acupuncture/acupressure treatment yesterday (first time) and found the experience very positive...while i was laying there with the needles sticking out of me, i suddenly realized i felt weightless and had no awareness of any pain...chronic pain is a constant part of my life, so it was a welcome change...the closest i have come to a meditative state in a long time

thanks for your kind words
sharon

sharon1965 · Post by **sharon1965** » Tue Jul 17, 2007 1:48 pm

oops, kathy was quicker since her reply wasn't so long and rambling!

kathy
it would be hilarious to see you marching back and forth with a sign saying "Sharon needs rest! Sharon needs rest!"

thanks for the thought!

jabberwock · Post by **jabberwock** » Tue Jul 17, 2007 2:44 pm

I'm so sorry your visit just served to further discourage you Sharon

I know that provincial coverage will only put up funds every 5 years; what about your private insurance? How often will it pay out for an xpap? Mine will only pay once every five years , which is why I had no choice but to purchase out of pocket for a machine that provides me with data. Like you, when I was diagnosed with OSA, I knew nothing about it and simply took the RemStar Plus that they told me I needed. Next time things will be very, very different

My insurance is so bad that it also pays for a mask only once every five years! How ridiculous is that? How many masks last for five years??

Anyway, hope your day (week?) improves. I will follow up with a pm.

Bonnie

Jeanie821 · Post by **Jeanie821** » Tue Jul 17, 2007 3:10 pm

(((sharon)))

cflame1 · Post by **cflame1** » Tue Jul 17, 2007 3:47 pm

I don't know of a guaranteed way to find a good sleep doc, but I like mine... he'll listen to me and usually agrees with me as well.

goose · Post by **goose** » Tue Jul 17, 2007 7:05 pm

Darn, Sharon. The good vibes didn't work....
Sorry to hear it didn't go well....Though I can't relate to the problems you face directly, I have a very good friend in Edmonton that doesn't have a lot good to say about the medical systems efficiency.
Gotta be something that can be done, but what -- I dunno.....sorry.

I have always found persistence to work, but I'm a very patient sort and I don't have to deal with your system. (Patience only goes so far though). I also understand that if you are to persistent they'll label you a PIA and you won't be able to get a doc to see you.....

Good to hear the acupuncture was a positive experience!!! Western medicine can learn a lot!!!

Hang in there -- Take care
cheers
goose

jrfoster · Post by **jrfoster** » Tue Jul 17, 2007 8:08 pm

cflame1 wrote:I don't know of a guaranteed way to find a good sleep doc, but I like mine... he'll listen to me and usually agrees with me as well.

I have said elsewhere in the fourm that if you can find a sleep doc who is also suffering from OSA and on CPAP therapy, THEN you will find someone who knows what they are talking about. We need a list of certified sleep docs who are on CPAP therapy! That is the certified doc to go to!

Jeff in TN

Mask

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