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Replying to Support Group In Or Around Sf Bay Area


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allison_flutegal

Posted Yesterday, 11:47 AM

Sorry for the double post, it posted me as a guest. I have an account my name is: allison_flutegal (just in case this also shows up as guest, despite logging in again)

 

Hello all! I am a little late joining this convo but it seems to still be moving along. I am a PWN and C. I noticed one member in particular is near me...Guest_Michelle...I hope you still read this. Please send me a message about getting together. I live in San Mateo, and Belmont would be very easy for me to get to. I actually say I live in Bel Mateo   :P

 

For everyone else, I am still willing to find ways to meet up. I was diagnosed in May and definitely having a hard time adjusting sometimes. 

 

 

I am honestly SO surprised there isn't more information, organizations, and support groups in our area about our diseases considering Stanford is here on the peninsula and leading (if I am not mistaken) on sleep study research.


Posted Yesterday, 11:46 AM

Hello all! I am a little late joining this convo but it seems to still be moving along. I am a PWN and C. I noticed one member in particular is near me...Guest_Michelle...I hope you still read this. Please send me a message about getting together. I live in San Mateo, and Belmont would be very easy for me to get to. I actually say I live in Bel Mateo  :P

 

For everyone else, I am still willing to find ways to meet up. I was diagnosed in May and definitely having a hard time adjusting sometimes. 

 

I am honestly SO surprised there isn't more information, organizations, and support groups in our area about our diseases considering Stanford is here on the peninsula and leading (if I am not mistaken) on sleep study research.

 

 


Posted 23 December 2013 - 10:04 PM

I'm in Sacramento, but travel to SF occasionally. I'd be interested in learning more about a group. Thanks!

 

Hi Niemie,

 

My daughter has narcolepsy and lives in Sacramento. Would you be interested in meeting up with her at to share your experience and challenges? I think it would be very helpful. Please let me know. My e-mail is jimsawyer15@yahoo.com.

 

Thanks,

 

Jim


Posted 05 November 2013 - 04:59 AM

Sorry, you can email me at budandcelia8373@gmail.com
Please do if you guys have a group

Posted 05 November 2013 - 04:57 AM

I hope this reply goes through, but fid you guys ever start a group? I m in desperate need of one. Im here in ssnta rosa, will to travel just for some people who I can relate to.

doinmdirndest

Posted 15 October 2013 - 01:53 PM

I must clear it with Susie; but perhaps a group of 8 or less could meet @ our place. those who would not find napa a sub-optimal location in which to meet, SOUND OFF so I know it's time to move ahead w/ the idea.

Posted 14 October 2013 - 06:16 PM

I am trying to get Narcolepsy diagnosed at Kaiser, Pleasanton.  Are there any online support grps around this area?  I am disabled with Neurology problem. Also have Adult ADD. Am positive for home test , Mild Sleep Apnea.  Mild is not treated.  I am offered an overnight test in the hospital, but am so weak, dizzy, EDS, I wonder if at age 73, I am able to get in to the hospital and get a test completed.  Is it not possible to get a diagnosis without the hospital test?


doinmdarndest

Posted 26 March 2013 - 12:36 PM

i live in napa.  is there a support group in 100 mile radius?


Posted 08 March 2013 - 03:00 PM

I live in Belmont, CA and would love to attend a support group. San Francisco would be too far for me to drive, so if there was one within 10-15 miles of Belmont

it would be great. 


Posted 04 November 2012 - 11:01 PM

What group did you come across? I have idiopathic hypersomnia and would also be interested in a support group.
Thanks!

I am looking for a support group, (or just someone to email or talk to)for my 12 year old daughter who has pretty severe narcolepsy with cataplexy. She feels alone and would really like to share her feelings with another 12 year old girl who might have similar issues.

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