ironhands

Ok I'm Compeltely Fed Up With Doctors.

29 posts in this topic

Incoming rant, I'm about to lose my *%%^

 

So to sumamrise: 

 

Did my PSG July 23rd

 

Got my results aug 7th, showing REM latency under 6 mins, and extremely fragmented sleep that the specialist ignored.

 

Saw another doc 3 days later, who said "yeah, that's probably N, but we have to redo everything because they didn't give you an MSLT"

told they'd schedule me in again, 2 weeks for insurance approval, 2 weeks until the test (which should be a week from today)

 

Just called them because nobody's called me.  They didn't contact the insurance place yet, it'll be another 3 weeks until they'll have the ok to redo the test the wasted, and another 2-3 until they can book the test beyond that.

 

It'll be the end of October before I get a test, and another 3 weeks past that until I can get any treatment.  December?!?!?

 

20 years dealing with this, I guess another few months won't matter, but seriously... WTH.  I can't just go to another clinic either since they have to fudge the insurance claim to cover their error.

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I feel ya pain. Dr's, similar to rush hour traffic drivers, have a way of making you want to unleash bodily harm on them!! I have been in similar situations so many times. I know lawyers can get in trouble for not returning phone calls - wish there were something like this for dr's!!! Just this week I had to call four times to get a response from the dr. Then left another message on a different topic and so the cycle begins again!! I have had narcolepsy for more than 30 years (I remember the last time sleep was normal.) and despite oh, six, seven, maybe more sleep studies and a prior MSLT it was only this June that I was given the n dx. And I have had another renowned sleep specialist for FIVE years!!! I came in in April, had the sleep study and MSLT in May, received the diagnosis in June and now in September I hope I am close to a therapeutic dose of medicine - ?? VERY FRUSTRATING no doubt! 

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Doctor is one of the few jobs where you can repeatedly screw up, fail to meet dates and goals, and yet still take home a top 10% salary.

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Just seems every step closer I get, it gets yanked back just a little bit.  I was hoping to already be receiving treatment by now

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I'm sorry you are being put through all of this.

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I thought your doctor was good?  If you're sleepy and you have no apneas or leg movements, why is he putting you through all that torture?  Sounds like he's either very conservative, or doesn't believe you.  Why didn't he go back and review the raw data himself if he questioned it?

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The doctor is good, I guess it would have been more accurate to say the clinic is who I'm fed up with.  He did say he questioned the validity of the first PSG due to the 0.0 score.  I'm assuming he's just being thorough, or maybe there was a problem with the insurance that they don't want to tell me about.  Is there a Toronto area clinic you recommend? 

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I think we all deserve cupcakes for putting up with this nonsense doctors put us through. Went to the neurologist today after she looked over my sleep study and in her infinite wisdom she told me to go see a sleep specialist.

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Nah, too much glucose, how about tacos?

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Only if they're REAL corn tacos...meaning not Monsanto grown corn and not that packaged crispy crap that's loaded with chemicals.

Make mine shrimp...not farmed shrimp or canned shrimp....with fresh tomato salsa with cilantro...organic please.

Ah well, seemed like a good idea at the time. ;)

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OHIP will only pay for a sleep study every two years.  That could be it.

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They're billing it to OHIP as a CPAP titration :P

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... EFF EFF ESS...

 

5 weeks since my consult, where they said 2-3 weeks to be able to schedule a re-do.  Called in today, since it's been a full 2 weeks since they said they'd put a rush.  They still haven't even sent out the paperwork, and it'll likely be a month until they get a response, so looks like I won't have any resolution until January now.  Going to have to work something out with my GP at this point. 

 

Am I just being too impatient, or is this normal?

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You're not being impatient...it's just a fact of life with the Canadian Medical System. Unless it's an emergency that puts you in the emergency department of a hospital, you just wait your turn.

Be glad that you're not waiting for cancer testing or cancer treatment...kinda puts your situation into perspective, doesn't it?

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fair enough, but it's not like it's OHIP that's not processing the app, it's the clinic not sending it out to be approved...  That I can deal with, but we haven't even got to that stage yet

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I don't know how you're going to light a fire under the clinic...is there any way that you can get through to the head person there? Somebody's not doing their job or they should provide a reason why. Are you limited to that one sleep clinic? I know it's close to you but there are others.

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I'd like to speak to the doctor I met with for my consult, but I don't know how to go about it.  seeing my GP in a few days, maybe she can make a call for me.  I dont' think I can go to another clinic since I wouldn't be able to get approved for a second study so quickly, normally only 1 every 2 years

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Went to the GP today, had to wait an hour to see her.  Got to nap in the waiting room though, so not all bad.  

 

She refused to rx me anything since she had no results from the sleep clinic.....

.....other than the results that say "sorem < 8 minutes require clinical evaluation" and "snoring is really loud", and the chaotic hypnogram

 

At least she's going to call them to find out the status of my re-do, since my calls went nowhere.  

 

Having a hard time just sitting here waiting, and knowing that I could probably be treated and feel a whole lot better tomorrow.  How do you deal with the anxiety?  I guess it's not that hard, since I haven't been treated for years...  I guess it's like waiting up on xmas eve, except it's never xmas day.

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FINALLY got a call back from them today, my retest was approved, so let's schedule me for.... November...no that's fully booked... Decemeber....no.... Ok, how's February 15th?

 

Thankfully I managed to get a consult booked in a few weeks to see about treatment in the meanwhile.  Hopefully I can present my case well enough to him to avoid having to do the MSLT and repeat the PSG.

 

Anyone have any advice on this?  I was thinking of quoting the recent JAMA Neurology article from Dr. Mignot showing that a SOREM on a PSG is enough of a predictor to eliminate the need for an MSLT when N is suspected. 

 

There's also my celiac tests that should be in now... There's a lot of evidence suggesting that HLA-DBQ1*0301, which is a marker for both N and Celiac, could present as secondary N which doesn't need an MSLT.  Generally talking N you hear about *0602, but the second largest genetic marker is 0301 from what I've just read, and hypocretin levels still show relatively normal in CSF.

 

So bloody frustrated right now, thankfully it's Friday and I can sleep in.... and daylight savings time for an extra hour of sleep!

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Alright, results are in.  They buggered up my first results.  No sign of SOREM during the PSG or MSLT - oddly enough though, my REM latency was 155 minutes this time around (average is 90).

 

103 arousals, AHI was 16, mostly hypopneas, so I'm doing the CPAP thing now.  Still somewhat concerned about N being present, but at this point, it'll be a few years before I can get a re-test and see how much the psych and apnea issues impact it, especially seeing as I have some of the other genetically related issues.  The abnormally short REM latency, and abnormally high REM latency are still troublesome, but until the apnea's under control, can't generate an unbiased DX.

 

Thanks everyone for your support during this diagnosis, wish you all the best in your treatments!

 

Think once I get this under control, I will look into the RPSGT program again.  Still very fascinated by sleep science

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You have sleep apnea, not narcolepsy.  Looks like your doctor's hunch was right about the 0.0 AHI on your prior test.  Why do you want a diagnosis of narcolepsy?  They will retest you in a few months with the machine.  What psych issues are you talking about?

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You have sleep apnea, not narcolepsy.  Looks like your doctor's hunch was right about the 0.0 AHI on your prior test.  Why do you want a diagnosis of narcolepsy?  They will retest you in a few months with the machine.  What psych issues are you talking about?

Yes, I believe that is what I said.  I don't want a diagnosis of N; just a solid diagnosis instead of it being up in the air, because even with the apnea diagnosis the sleep architecture is still highly disturbed.  My retest with the machine is next Monday, so we'll see if the sleep architecture is fixed up now that the CPAP's working - I'm checking my detailed logs every night, my AHI's down from 16 to ~0.5 which is very low, so I'm on the right track there and I'm feeling more alert already, but still physically tired.  Should take a month of two before I really start noticing the effects.  Haven't had any hallucinations this week, nor am I consciously waking up more than once.  Last night it was only once when I needed to refill the humidifier - the dryness was pretty bad.

 

Psych issues are confirmed atypical depression, possibly avoidant personality disorder (quite likely, but undiagnosed, need to get the sleep under control before an unbiased diagnosis can be made of course, as the deprivation can be having a substantial impact on the mood).  it's not uncommon for avoidants to seek out stimulants to self-medicate.  Doc advised me to pick up some tryptophan to boost my serotonin to help regulate the mood and sleep, and a massive dose of the vitamin B's

 

Still somewhat concerned about it being N, but it's pretty unlikely at this point.  Not really satisfied with the MSLT results because I was pretty stressed, but I don't really care what the diagnosis is ultimately so long as I start seeing an improvement.  REM latency on the first PSG was 8 minutes, the second, 158, both are pretty atypical, as are the number of spontaneous arousals, but I'll have my results with the CPAP in a few weeks and we'll go from there.

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Well I sure hope you get some relief from your EDS soon. And I definitely hope you do not have Narcolepsy as well. OSA alone is a lot more manageable than both.

Either way, symptomatic relief is the goal and I hope you attain it. Please take good care of your mind, body and soul- only good things come of it. And you deserve good things in your life.

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So do I.  I'm a little more alert now, but it'll be a while for the body to get all caught up if the apnea is responsible for all of this.  Any idea what else could be causing so many arousals when they aren't all apnea related?

 

Thanks for the support!  Starting to feel like there might be resolution in sight for a change.

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So do I.  I'm a little more alert now, but it'll be a while for the body to get all caught up if the apnea is responsible for all of this.  Any idea what else could be causing so many arousals when they aren't all apnea related?

 

Thanks for the support!  Starting to feel like there might be resolution in sight for a change.

Here's my 2 cents- don't wrack your brain with the "what else could be causing this". It will drive you bonkers. Until the OSA is well managed, even the best specialist will not be able to answer that.

 

Give yourself a break and take care of yourself.  If-  when everything is well managed and you are taking good care of your body, mind and spirit- there is still a problem, then you have a problem. Resist jumping that far ahead until you have done everything else for enough time.

 

I hope that does not sound dismissive. I mean it more like" steady on" or "chillax".

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