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Grand Rapids Area Anyone?


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#1 greatbig47

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Posted 13 April 2008 - 05:51 AM

I'm interested in knowing if a group exists in the GR/ West MI Area.
Can you tell me what you know?

THANKS!!!

#2 feelAlone?

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Posted 11 July 2008 - 03:32 AM

QUOTE (greatbig47 @ Apr 13 2008, 01:51 PM) <{POST_SNAPBACK}>
I'm interested in knowing if a group exists in the GR/ West MI Area.
Can you tell me what you know?

THANKS!!!



Have you found anything out? I'm from the area too and have to say that I haven't been told of one. I am starting to post here and am glad to read that I am not alone on all of this. I knew I wasn't for I have read plenty of articles and such on N, but I still feel very alone sometimes. I guess I'm hoping that posting back and forth here will help with that. I have been told that I am a "unique" patient - we can't find a good combination of meds to make life "norm", whatever that actually is. My Dx was in November 2004 and for a brief time things were great - then it was just downhill.

#3 Guest_Jennifer_*

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Posted 01 September 2008 - 11:33 PM

QUOTE (feelAlone? @ Jul 11 2008, 08:32 AM) <{POST_SNAPBACK}>
Have you found anything out? I'm from the area too and have to say that I haven't been told of one. I am starting to post here and am glad to read that I am not alone on all of this. I knew I wasn't for I have read plenty of articles and such on N, but I still feel very alone sometimes. I guess I'm hoping that posting back and forth here will help with that. I have been told that I am a "unique" patient - we can't find a good combination of meds to make life "norm", whatever that actually is. My Dx was in November 2004 and for a brief time things were great - then it was just downhill.

I am in Grand Rapids and newly diagnosed with Nacolepsy. I am looking for a group. I tested positive for it in my multi sleep latency test and carry the gene for narcolepsy as well life has been a struggle over the last ten years or so never knew what was going on until i met with my sleep specialist. My meds were seeming to work out great unitl a couple of days ago --i think that i am going to increase the dose to 1.5 tabs of Provigil instead of the one tab. I would be interested to find out what meds others are taking too.

#4 Fra2302

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Posted 05 April 2009 - 02:04 PM

Anyone know of any support groups in the Lansing area.

Also, does anyone know of getting help with paying for Provigil.


Thanks,
Fra2302

#5 bishope

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Posted 02 October 2009 - 10:50 PM

I'm interested in knowing if a group exists in the GR/ West MI Area.
Can you tell me what you know?

THANKS!!!


Yes!! I'm in the GR area and I've been dying to get in touch with other PWN. Is there anything formal set up for a support group yet?

#6 hopetohelp

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Posted 27 July 2010 - 08:23 PM

Yes!! I'm in the GR area and I've been dying to get in touch with other PWN. Is there anything formal set up for a support group yet?


Hi folks! I'm trying to get something started. check out http://groups.yahoo....higannarcolepsy

Anyone want to help? please email me, we can talk more. Or at least keep an eye on these forums and the Yahoo page for when the first meeting is.

Right now we have sponsorship, informational resources, and I'm building a website. Now we just need to let people know about it and find some people to help run it.

As far as location, I was hoping to see what responses I get from people interested and go from there. The meeting location could also change or we could have more then one meeting. Please email me for more info!

#7 Young_confused

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Posted 07 March 2014 - 08:21 PM

I am in Ann Arbor