Old 12-08-2011, 08:23 AM #16 (permalink)
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Default Re: Diagnosed 30 Sept

Hi neighbor! I live right in your backyard, Centerville, GA. I was diagnosed at Emory on October 19, 2010 with Bulbar onset. Emory is a terrific ALS clinic. I'm sure they're not deliberately stalling you. I do know that the RN, Nicole, who typically schedules appointments has been in Australia. She is there, at a conference, advocating for ALS patients. You will find at Emory that their first priority is always the patients. They do everything possible to help you through every moment of the disease. I can email a question and have an answer in a matter of hours. If serious, in a matter of minutes. I feel as though because of their care and diligence, my progression has been much slower. My breathing is still good and I can still walk a mile every day without getting breathless. Keep calling. Ask for Nicole. You may need your doctor to give you a referral. Please email me with any questions or concerns. There is hope. Lots of possible treatments in the works! lajones57@cox.net. Also, I'm on Facebook and belong to a site " Ceftriaxone Clinical Study". We'll all get through this together!
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Old 12-08-2011, 09:11 AM #17 (permalink)
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Default Re: Diagnosed 30 Sept

Welcome aboard Shawn! So sorry you needed to join us. You'll find some invaluable info and alot of caring people here to guide and support you on your journey with ALS.
I have limb onset. I'm doing my Clinic visits at MCG as well as participating in the Ceftriaxone Clinical Trial.
Hope You get your appointment with Emory soon.
Best wishes.
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Old 12-08-2011, 09:29 AM #18 (permalink)
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Default Re: Diagnosed 30 Sept

Shawn,
Sounds like you and I are on the same timeline with the same symptoms. Sorry you have to go through this.
I was at WR-ALC from '02-'05 in the Logistics Career Broadening Program and would have been happy to retire there.
I'm sure you're already locked in with a local PVA rep; they can be invaluable.
Hang tough, brother.
Regards,
Jeff
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Old 12-08-2011, 09:34 AM #19 (permalink)
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Default Re: Diagnosed 30 Sept

Hi welcome. My dad had bulbar Palsy. I am so sorry you are here, you have come to the right place for questions, love and support. Let us know what we can do for you. Good Luck
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Old 12-08-2011, 11:20 AM #20 (permalink)
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Default Re: Diagnosed 30 Sept

I am sorry you had the need to find this wonderful club that never closes, always gives good advice and has lots of uplifting support to spread around. I agree with the ideas, go all you can now, if you can, get the things you need before you really need them. An ALS clinic is a great place to get lots of answers. Mine wanted to do their own EMG to verify. Maybe a good place for a second opinion. Just a thought. Good luck, love and laugh everyday.
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Old 12-08-2011, 02:30 PM #21 (permalink)
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Default Re: Diagnosed 30 Sept

So sorry about your diagnosis, Shawn. You'll find so much care and support here on the forum. Yasmin
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Old 12-10-2011, 01:45 AM #22 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn
Sorry to hear about your diagnosis
I also was recently diagnosed.
My ALS is mostly in my limbs, particularly legs.
Lets both of us live on day at a time and make the most of what we have
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Old 12-11-2011, 07:37 PM #23 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn.

Welcome to the forum. I hope you find plenty of support, friendship, information and entertainment.
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Old 12-11-2011, 08:37 PM #24 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn,
Welcome. I wish you all the hope and positive vibes possible.

There is strength in numbers, so stay strong.

Cheers,
Casey
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Old 12-12-2011, 02:48 PM #25 (permalink)
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Default Re: Diagnosed 30 Sept

TedH5, I saw Dr Hartman at MCG. My second opinion has finally been scheduled for 10 Jan at Emory. Hopefully, I can get on some info on the trials while I'm there.
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Old 12-12-2011, 02:58 PM #26 (permalink)
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Default Re: Diagnosed 30 Sept

Thank you everyone for your thoughts...I have been traveling so I can't get back on the forums daily...heading down to FL tomorrow for some Crappie fishing. I have some questions about the peg tube but will jump to another forum to gain more knowledge. Is it needed while I can still eat and drink without any problems?
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Old 12-12-2011, 06:49 PM #27 (permalink)
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Default Re: Diagnosed 30 Sept

I did mine while I could still eat and drink but could not swallow a pill. Continued eating for about a month just put all meds and lots of water in tube Loved that
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Old 12-12-2011, 06:50 PM #28 (permalink)
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Have a great time in Florida
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