This topic contains 25 replies, has 9 voices, and was last updated by sweettsunade 4 months, 3 weeks ago. This post has been viewed 982 times
- October 23, 2017 at 4:26 pm #3818
I wrote a letter to my sleep doctor thanking him for listening when I said I was tired and how much treatment has improved my quality of life. He called me to thank me for the letter. It was obvious the letter meant more to him than any amount I could pay. It sucks I had my first sleep study when I was 17 and no one bothered to even consider a central sleep disorder. 13 years later, my current sleep doctor almost immediately recognized the problem.
I really can never adequately express my gratitude to him. I’d encourage anyone that has an exceptional doctor to thank them. The really great ones don’t do it for the money. Hardly anyone takes the time to thank anyone these days and it’s a shame.
You need to login in order to like this post: click hereOctober 23, 2017 at 6:31 pm #3823
I totally agree with your sentiment. I also have an excellent doctor with an experimental spirit who is willing to let me experiment with different approaches. More specifically, I’ve been trying to find the right dose of Xyrem. At too high a dose, I get bad side effects (anxiety, shakes, and high blood pressure) that seem to go away on a lower dose with occasional one-day breaks. I make sure to thank him at every meeting.
Too many docs think they know your body better than you do. You want a doctor with an empirical temperament and a small ego.
You need to login in order to like this post: click hereDecember 13, 2017 at 3:50 am #4111
Good idea! I wish I had done this when I was still a patient of the doctor who diagnosed me with narcolepsy; she was fantastic. Ironically, the sleep doctor I had seen years before her was terrible and completely uninterested in my case. That doctor definitely didn’t believe there was anything wrong with me other than being in college and having poor sleep hygiene, but I later learned that doctor received some sort of doctor of the year award from the Narcolepsy Network for being such an advocate for narcoleptics. Very shocking as she never even considered I had narcolepsy…
I’ll be sure to thank the next good one, though!
You need to login in order to like this post: click hereDecember 13, 2017 at 5:12 am #4113
A lot of awards have nothing to do with merit unfortunately. A little known fact about NN is that they received an enormous amount of money from Jazz pharmaceuticals, the company that didn’t develop Xyrem but rather purchased the rights to it and then raised the cost of the medication from a few hundred dollars to over 100k per year per patient. NN couldn’t afford to keep the forums going because they cost $60 a month supposedly and that’s why we built this site. Unfortunately awards don’t mean much these days.
You need to login in order to like this post: click hereDecember 13, 2017 at 12:06 pm #4126
@Jason – Nice idea! I may do this to my GP (who I see about twice each 5 years)…
Attended the NN conference and during one of the sessions, which was about N Chat -a Twitter PodCast group- the NN message boards were brought up by someone. There was a lady in the back of the room who happened to be possibly in the NN board, she’s very involved with it regardless, she chimed in stating they had to shut them down due to “Russian hacking” – no joke. I couldn’t help myself but approach her there after and voice my discontent-ness with the loss of the valuable information that was there, adding there just has to be a semi, or preferably, entirely (if desired) anonymous forum for people. She said something about all of that valuable info had been targeted and Russians had penetrated the boards. I just continued with, Facebook is just not the same and I personally have no desire to be involved there, after having tried it out, as it just feels like there are trolls and clashing way too much so, it’s just not the same.
The next day, I went up to her and made sure that I hadn’t been too rude, sort of apologizing for any intensity that may have come off during that conversation, and finished by saying once again I was just very very disappointed in NN for removing the forums.!
I mentioned this forum to some peoples while there, specifically the other few people who I noted being bothered by the loss of the message boards.
You need to login in order to like this post: click hereDecember 13, 2017 at 12:58 pm #4127
I don’t know what sort of drugs that lady was on but uhh the Russians? Lol. I’m going to go ahead and say they don’t give two craps about a some message boards about narcolepsy. There really was no alternative to us making this forum for the exact reasons you mentioned. Reddit or Facebook are basically collecting data on you and Facebook is particularly ridiculous given it’s totally not anonymous.
Those NN forums saved lives and their loss was just obnoxious. Over 20,000 posts were lost. NN is basically funded by Jazz now and I think that’s inherently a conflict. I’m not opposed to the medication or anything, but I don’t like censorship or the appearance of collusion.
We don’t collect or share any data on here and obviously never will. Absent the Russians hacking us, I’d say this forum offers more privacy than any alternative 😉
You need to login in order to like this post: click hereDecember 13, 2017 at 3:07 pm #4132
RUSSIANS??? I just snorted diet coke all over my keyboard. What a load of crap. Yes, they had a LOT of fake memberships on there but REALLY?
You need to login in order to like this post: click hereDecember 13, 2017 at 4:36 pm #4135
Lol I’m going to go ahead and say we are better off on our own. That simple captcha has pretty much weeded out all of the fakes on here. DR is our chief of security lol. The transition was painful and we don’t have nearly as much content but we are united. I had so many questions when I was first diagnosed and I was so grateful for the answers and tips given by those before me. I’d be pretty sad if we hadn’t kept the community together.
But seriously, the $70 a month or whatever excuse and now Russians? We might be sleepy but we aren’t stupid. It’s pretty insulting.
You need to login in order to like this post: click hereDecember 13, 2017 at 5:13 pm #4143
Lol, the fookin Russians, that’s droll. I’m sure Putin is totally on the site right now hitting the refresh button for all the latest and greatest narcolepsy info. As far as security, most of it is just common sense. If an adbot does slip by the captcha, which occasionally happens, they usually have some obvious rando address like email@example.com or firstname.lastname@example.org . Afaik, no bots have managed to post on here yet, even if they slipped by the captcha and email confirmation process to create an account.
My current jam: Anathema - Springfield
You need to login in order to like this post: click hereDecember 13, 2017 at 6:17 pm #4146
Wish I made that up.
When she said it, I had a hard time not reacting in a vocal, WTF manner (I definitely ‘sighed’ loudly).
As I mentioned in my comment above, I later approached her and made sure that I’d not been rude.
It really is a shame, I’m quite sure I used those words to her.
The following is obviously just tied to, for profits approach to medicine and healthcare.
What really bums me out about NN as well as Stanford, and I’m not in it to talk trash on anyone, but really also it’s just a common practice in medicine or the medical realm, relating to the above, is how there’s always this ‘you can be treated and functional’ attitude.
Completely overlooking certain aspects and circumstances that people do have, it can result in people being wrongly convinced, and/or sidetracked, and/or entirely ignored, or over it.
There’s no sight into lifestyle or a symptom for what it may relate to, rather there’s always a specialty that whatever symptom falls into.
This site is great to have here and I’m absolutely into creating content for it, in time. Am just sitting on the Terminology book at this point, I think about making other videos but I really am bad on camera and not trying to be a vlogger…
You need to login in order to like this post: click hereDecember 13, 2017 at 7:48 pm #4148
Sorry but I gotta have a little rant here about the Narcolepsy Network Forum. They can give whatever fake news they want to about why they shut down. BUT, the fact that they KNEW that we were scrambling to set up a new group and didn’t offer us the content of the old site for reference is UNFORGIVABLE. It wouldn’t have cost them a dime.
Skate, you gotta move to Colorado and learn to snowboard too. It’s a lot more forgiving than concrete. And, where’s your helmet, your kneepads, your elbow pads?
You need to login in order to like this post: click hereDecember 14, 2017 at 2:19 am #4154
True, @Jason. I think the particular award was “Clinician of the Year,” and I recall being appalled it was traditionally given to a doctor who advocated for patients with narcolepsy and narcolepsy research. Yet she didn’t mention narcolepsy despite my test results indicating potential signs of it, and instead casually suggested that maybe a tonsillectomy would treat what she thought could be potential mild sleep apnea (she was also an ENT who ran an outpatient surgical practice in conjunction with her sleep center…hah!). I passed on that suggestion…
A lot of pharmaceutical drugs aren’t necessarily developed in-house; the drug Provigil was purchased by Cephalon from a French company before Cephalon really knew what a blockbuster drug it would be. What Jazz seems to have done with their pricing is definitely a lot more morally questionable, however. My guess is most of their profits are coming from Xyrem, so they’re keeping the price high while they hold the patent. Truly unfortunate for the patients who need the drug at an affordable price.
You need to login in order to like this post: click hereDecember 14, 2017 at 10:02 am #4157
Engi, You are absolutely right about drug development. Frankly pharmaceutical companies spend more on marketing than research. And, Jazz was on the verge of bankruptcy prior to Xyrem. They get pretty much their entire 1b in revenue from Xyrem, a drug that’s dirt cheap and been around since the 1800s. It’s actually not even a drug. It’s just GHB, which is naturally produced in the body in small quantities. Used to be OTC lol.
@rabbit just fyi, I disabled the captcha for logins because it was annoyed me lol. It’s still on for registration tho. Feel free to change it if it becomes a problem.
@ferret, you know my feelings! The NN content is backed up somewhere. It’d take forever to put it in a very helpful format though.
@sk8, one of the reasons I like my doctor so much is that he refused $250k from the various pharmaceutical companies for speaking fees. He said he wanted it directly donated to charity. They refused and he told them to f off lol. But he’s a rarity. He’s still a big fan of the Vigils but doesn’t care for pharmaceutical companies.
You need to login in order to like this post: click hereDecember 14, 2017 at 10:17 am #4158
If they had offered us the opportunity to take over the NN forum…
1) We could have changed its name
2) We could have deleted any and all references to Stanford
3) It would have taken us less than a week to weed out the fake memberships. I did it in 3 days as I was sending out pm’s to inform people that the NN forum was shutting down and directing them to this site. It was so glaringly obvious after three pages which ones were the fakes.
You need to login in order to like this post: click hereDecember 14, 2017 at 10:28 am #4159
I wondered how that happened. I remember I tried it one time and saw some disturbing stuff in the logs. Looked like people trying to fuzz or brute force the login page. If you guys really hate it we can turn it off again, but tbh, it’s less of a security risk to just stay logged in, unless you are accessing on a public machine.
My current jam: Anathema - Springfield
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