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Freaking Know It All Doctors....


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#21 Lais02

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Posted 25 April 2009 - 03:52 PM

QUOTE (Marcianna @ Apr 25 2009, 09:01 AM) <{POST_SNAPBACK}>
?? Doctor Clark who? Do you happen to know a First name? A doctor who is pwn....wow that would be kind of cool....maybe?


I googled him with some key words and got this guy? smile.gif http://thesleepsite....ent/view/60/73/

lol... I don't know if he's the right Dr Clark though

#22 merrymom1013

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Posted 28 April 2009 - 07:53 PM

Robert E Clark the sleepsite.com? I don't have any personal experience with him, but I hear he has been living with & treating narcolepsy for years.
My daughter has a super sleep doc not too far from Phila... I think he will be retiring in a couple of years though. sad.gif If anyone is looking for a great doctor in that area, I'd be happy to share.

#23 Marcianna

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Posted 28 April 2009 - 08:07 PM

OMG yes I got hold of him! He sent me an email!!!!
I am so excited I can hardlt breathe! YaY!!! new doctor! lets all cross our fingers!!!!

#24 Lais02

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Posted 28 April 2009 - 08:28 PM

QUOTE (Marcianna @ Apr 28 2009, 06:07 PM) <{POST_SNAPBACK}>
OMG yes I got hold of him! He sent me an email!!!!
I am so excited I can hardlt breathe! YaY!!! new doctor! lets all cross our fingers!!!!

Great! I'll keep my fingers crossed for you smile.gif

#25 sleepless sleeper

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Posted 28 April 2009 - 10:01 PM

QUOTE (Marcianna @ Apr 23 2009, 04:08 PM) <{POST_SNAPBACK}>
Thanks for the info I will look into them. . . I have actually tried provigil before and I will jump off a mountain before I take those crack pills again. lol... My cataplexy is severe I have actually severely injured myself from it before. (fell on scissors. good thing I stabbed my leg and not my abdomen....) so maybe that will help? I also have fibromyalgia and my wheight is getting out of control... so lots of things it can help with one drug. Why that seems like a bad idea to them I just dont understand....


so that's the scissors in leg story?

#26 sleepless sleeper

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Posted 28 April 2009 - 10:05 PM

QUOTE (jenji @ Apr 23 2009, 10:49 PM) <{POST_SNAPBACK}>
Marcianna:

Hey, one more thing, be careful about telling doctors that you have fibromyalgia. Unfortunately that dx carries a profound stigma, even more so than narcolepsy if you can believe it.

My strategy, as I have both as well was this:

When seeing a new doctor I only told him about FM if asked. However, for the most part, a sleep doctor should know that FM is a possibility as its major stressor is unrestful, disturbed sleep; the cause is a whole other story, hence the stigma.

And so, feel any new doctors out and you'll know when it's time to tell them, if at all. I used to have a doctor that didn't even know about it b/c he was a misogynistic pig who literally scoffed at the dx before I even mentioned it, I don't remember how it came up, but he basically said he didn't believe in it and you'd be surprised, there are many, many doctors who do not believe in it, as they believe it is a neurotic, psychosomatic condition, despite the published, overwhelming evidence that it is indeed a central nervous system disorder. And so, I kept the condition to myself while with him and simply let a rheumatologist handle the FM and the jackass handle the other issues.

Thankfully, I now have a doctor who handles both and believes in both, as one exacerbates the other. And so I only caution you so that you might have some insight as to what you might run into out there b/c if I remember correctly you have been just recently dx'd with FM and I've been dealing with it since '95. I've run into several doctors who have a major hang up about FM. The stigma is a bit better, but when you run into the ignorance, it burns deep.

Good luck.
jenji

fibromyalgia, chronic fatigue, and a few others. Brain not working well right now.

yeah, but what 's new, eh?

#27 sleepless sleeper

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Posted 28 April 2009 - 10:10 PM

QUOTE (Marcianna @ Apr 28 2009, 07:07 PM) <{POST_SNAPBACK}>
OMG yes I got hold of him! He sent me an email!!!!
I am so excited I can hardlt breathe! YaY!!! new doctor! lets all cross our fingers!!!!


omg !!!!!!!!!!!!!!!!!!!!!! i am so freakin happy for you, girl!
keep us up to date , please!!!!!!!!!!!!!!!!


#28 sleepless sleeper

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Posted 28 April 2009 - 10:12 PM

I just looked at the website, and I want to go so badly..... Where is the crying face?

BUT, I am sincerely happy for you, and I will live my next dr appt through u vicariously.

#29 sunrisemoon

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Posted 28 April 2009 - 11:33 PM

QUOTE (Marcianna @ Apr 29 2009, 11:07 AM) <{POST_SNAPBACK}>
OMG yes I got hold of him! He sent me an email!!!!
I am so excited I can hardlt breathe! YaY!!! new doctor! lets all cross our fingers!!!!

That's fantastic news!

*crossing fingers for you*

#30 merrymom1013

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Posted 29 April 2009 - 05:58 PM

Great news! I hope this turns out to be the right doctor for you. The TAS board has a recommended doctor section, where people post only positive doctor experiences. Could we start a similar thread here- maybe by city or state? I never would have found my daughter's wonderful doctor without email suggestions from longtime NN members.

#31 Lais02

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Posted 29 April 2009 - 10:25 PM

QUOTE (merrymom1013 @ Apr 29 2009, 03:58 PM) <{POST_SNAPBACK}>
Great news! I hope this turns out to be the right doctor for you. The TAS board has a recommended doctor section, where people post only positive doctor experiences. Could we start a similar thread here- maybe by city or state? I never would have found my daughter's wonderful doctor without email suggestions from longtime NN members.

That's a great idea... hopefully someone who can make it happen reads this thread smile.gif

#32 Marcianna

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Posted 30 April 2009 - 05:19 AM

QUOTE (Lais02 @ Apr 30 2009, 04:25 AM) <{POST_SNAPBACK}>
That's a great idea... hopefully someone who can make it happen reads this thread smile.gif


lol. dork. YOU can do this now. hahaha.

Not to worry Grasshopper....

When your out of class for summer we will get into this more.


but I agree it would be good to do, but I am not sure if we can (as in allowed?) lets ask our beloved Web guru.....

#33 Marcianna

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Posted 30 April 2009 - 05:20 AM

so far update. this guy is great with emails. I kinda grilled him in a polite way...so far so good he is still willing to see me...... lol

#34 sleepless sleeper

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Posted 30 April 2009 - 07:44 PM

Wow. He passes all kinds of tests. He's a keeper.

#35 Lais02

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Posted 30 April 2009 - 09:50 PM

QUOTE (Marcianna @ Apr 30 2009, 03:19 AM) <{POST_SNAPBACK}>
lol. dork. YOU can do this now. hahaha.

Not to worry Grasshopper....

When your out of class for summer we will get into this more.


but I agree it would be good to do, but I am not sure if we can (as in allowed?) lets ask our beloved Web guru.....


haha I know I'm included in someone... I just don't have time to figure this out right now smile.gif thanks for being the someone else who can make it happen!

#36 jlossrn

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Posted 01 May 2009 - 08:52 AM

I am also very happy that you found a good sleep doc. I can only scratch the surface of what it must be like to deal with moron doctors. I was fortunate to have a great doc from the word go. My suggestion for everyone who is looking is to go to a univercity hospital. They will have the specialist who actually know something about it. smile.gif Good Luck

#37 Marcianna

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Posted 01 May 2009 - 11:00 AM

QUOTE (jlossrn @ May 1 2009, 01:52 PM) <{POST_SNAPBACK}>
I am also very happy that you found a good sleep doc. I can only scratch the surface of what it must be like to deal with moron doctors. I was fortunate to have a great doc from the word go. My suggestion for everyone who is looking is to go to a univercity hospital. They will have the specialist who actually know something about it. smile.gif Good Luck


Well so far so good, I have not actually met him yet...we will see. Of course my traditional paranoia is kicking in with the whole trust issues, but so far, his Nurses and assistants seem very nice. I was actually complimented on my knowledge as opposed to the usual " oh you think you know everything cuz your in a support group" mentality...


Im still holding my breath... but hopefully this guy will work with me.

I really hated meds. Hate them passionately. Deciding to do them was a big step alone. At this point I could easily still say screw it and continue on my merry manic way....


ugh... Im such a *BEEP*... but its my body you know?

#38 sleepless sleeper

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Posted 01 May 2009 - 02:29 PM

I really hated meds. Hate them passionately. Deciding to do them was a big step alone. At this point I could easily still say screw it and continue on my merry manic way....
If they help, use them. But I definitely understand.

ugh... Im such a *BEEP*...
I've already started clearing the path for ya.

but its my body you know?
Yeah, we know, and it's great to have this attitude. Just try telling a pharmacist or a doctor, though.




#39 Marcianna

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Posted 27 May 2009 - 05:07 AM

My first appointment with Doctor Clark went so well I came home and cried. I could not believe it. My appt lasted 3 hours. whens the last time anyone had an appt last that long? seriously?

He is GREAT. At this point we are not going to treat my Narcolepsy, I have to do a new two nighter sleep study, because, even though I had previously been told by past doctors, I did not have Apnea, the actual results showed differently, and that disturbed both me and Doctor Clark, that they decided not to bother treating me for it, jus start shoving provigil down my throat...grrrr. Any way, going to treat the apnea first and then go from there...

This guys is freaking amazing. I was just floored. AND he appreciates that I went med free for so long. He says that in my particular case it was probably the better decision. no need to be on meds that I know dont work for me. That being said he also think I am a pretty severe case and and I do need to start doing something. Through NN I have been able to do lots of research and watch what everyone else was doing, and he really likes that I pay so much attention to that also. He is the kind of doctor that doesn't just treat you. he helps you to understand what is really happening, aqnd looks at things from all angles before making decisions.

Any one who needs a new doc, look him up. He has patients all over the country and the world. =)

So YAY!!!!

Maybe a happy ending after all?

#40 sunrisemoon

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Posted 27 May 2009 - 06:24 AM

QUOTE (Marcianna @ May 27 2009, 08:07 PM) <{POST_SNAPBACK}>
My first appointment with Doctor Clark went so well I came home and cried. I could not believe it. My appt lasted 3 hours. whens the last time anyone had an appt last that long? seriously?

He is GREAT. At this point we are not going to treat my Narcolepsy, I have to do a new two nighter sleep study, because, even though I had previously been told by past doctors, I did not have Apnea, the actual results showed differently, and that disturbed both me and Doctor Clark, that they decided not to bother treating me for it, jus start shoving provigil down my throat...grrrr. Any way, going to treat the apnea first and then go from there...

This guys is freaking amazing. I was just floored. AND he appreciates that I went med free for so long. He says that in my particular case it was probably the better decision. no need to be on meds that I know dont work for me. That being said he also think I am a pretty severe case and and I do need to start doing something. Through NN I have been able to do lots of research and watch what everyone else was doing, and he really likes that I pay so much attention to that also. He is the kind of doctor that doesn't just treat you. he helps you to understand what is really happening, aqnd looks at things from all angles before making decisions.

Any one who needs a new doc, look him up. He has patients all over the country and the world. =)

So YAY!!!!

Maybe a happy ending after all?
That's really very cool.

I think the only reason I didn't cry after I found my latest doc was a) I had to catch the tram straight back to work, cool.gif I'd already had a major meltdown in the office before I even saw him. cool.gif