Old 12-07-2011, 09:54 PM #1 (permalink)
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Default Diagnosed 30 Sept

Hello everyone, my name is Shawn and I was diagnosed 30 Sept of this year in Augusta at the Medical College of Georgia. I am just now posting becasue it took me this long to get registered on the site...lol... I guess I am one of the lucky few who receive such a quick diagnosis. My only symptoms were slightly slurred speech and a bit of trouble swallowing certain solid foods. They did the EMG on my leg, stomach and tongue and POW, ALS. I haven't really noticed much in the other parts as of yet except for cramps in my neck when I yawn and also in my ribcage. Although I do get short of breath, my measurement was around 85%. I did a lot of reading here before my diagnosis and really thought I didn't have ALS as I am able to do everything as I have always done. I'm sure I will be seeking advice "IF" their 90% diagnosis is accurate.
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Old 12-07-2011, 09:59 PM #2 (permalink)
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Default Re: Diagnosed 30 Sept

Shawn did they mention bulbar to you, cause that is how my husband started. So very sorry about your diagnosis. I f I can be of any help let me know ok, and I hope you progression is very slow
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Old 12-07-2011, 10:01 PM #3 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Joni, and thank you. No, they did not, although my Neurologist knew that I had done a ton of research, so I guess it was understood based on my symptoms.
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Old 12-07-2011, 10:04 PM #4 (permalink)
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Default Re: Diagnosed 30 Sept

Shawn, sorry to hear about your diagnosis, but welcome to the forum...
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Old 12-07-2011, 10:12 PM #5 (permalink)
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Default Re: Diagnosed 30 Sept

Shawn, sorry about the diagnosis, but welcome.

Thank you for serving our country.

My husband has bulbar ALS, also. I hope you will be able to do all the things you wish, before things get too difficult!
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Old 12-07-2011, 10:48 PM #6 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn, mine started the same way too. Did they mention any trials you can get into?
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Old 12-07-2011, 10:54 PM #7 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn, first and foremost, I am very sorry for your diagnosis. Did you see Dr. Rivner in Augusta? I know he has another Dr. that helps him as well, his name is eluding me right now Where will you be seeking your 2nd opinion? Obviously my advice is at Emory. Also there is a Nurse who works for the ALS association of Georgia, named Liz Bohling, she lives outside of Macon. If you like I can PM you her email address or you can PM y our contact info and I can send her your info. Even though you are obviously early in the process it is good to know what support and resources exist.

Whatever I can do to help, please let me know.

Stay strong and keep the faith!
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Old 12-07-2011, 10:58 PM #8 (permalink)
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Default Re: Diagnosed 30 Sept

Not yet...have only been to one follow-up so far..still waiting for Emory to schedule second opinion...I think they are stalling me...
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Old 12-07-2011, 11:37 PM #9 (permalink)
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Default Re: Diagnosed 30 Sept

Sorry Shawn. That is how mine started back in April. I ignored it until June. Was in denial major. Still am. Now have gotten 4 separate opinions and all the same. Last emg 2 months ago Nero doc said I should not be walking I am still walking and use of my arms and hand is limited but I keep trying ". Got peg tube in August. Glad I did. Cannot swallow at all. Cannot talk at all. I can write and grunt. My voice is good My mouth and tongue don't work .. May God Bless You. Start fighting now. Felica
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Old 12-07-2011, 11:56 PM #10 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Felica, my symptoms started around February of this year...Like I said earlier, I have noticed my speech getting a little worse but nothing else as of yet. I eat and drink whatever I want, sometimes have to wash crackers, lettuce, etc., down with liquid or a second swallow. ENT thought it was LPR initially since I have GERD at the other end of the esophagus. Reflux laryngytis...he said...I wish it was!
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Old 12-08-2011, 01:02 AM #11 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn, sorry about your diagnosis. Welcome. I've stopped in your town many times to see your air museum. Hope we can help.

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Old 12-08-2011, 04:50 AM #12 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn, my husband's started the same way too. (in Oct. 2009 first symptoms started) ,we got the diognasis in June 2010. his FVc was 80 then itS worse now.
Don'T forget Most important thingss are nutrition and respiration. If you start to use PEg and Bi BAp earlier you'll have a long and easier life. My husband refuses using any instruments including wheelchair and we are having great difficulties now. I know it's not easy to accept this disease but there is nothing to get rid of ALS don't fight with the disease just learn how to live with it. We didn't succeed it I wish you a slow progressiıon and good luck . Good bless you and your family.
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Old 12-08-2011, 07:28 AM #13 (permalink)
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Default Re: Diagnosed 30 Sept

Shawn
Welcome to the Forum and the Club that no one wanted to join. My husband received his second diagnosis from Emory and it took forever for us to get scheduled. (February until April). Dr. Glass and Nicole in the ALS Clinic are wonderful but THIS is the best place to get info. Post your questions here. I'll echo what you will read over and over. Get what you need before you need it. ALS is so unpredictable. Different in different people and progression can be fast or slow.
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Old 12-08-2011, 07:43 AM #14 (permalink)
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Default Re: Diagnosed 30 Sept

Hi Shawn, so sorry about your diagnosis I know how much it hurts. Two bits of advice, get a peg tube before you lose weight and do any traveling now while you can.
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Old 12-08-2011, 08:08 AM #15 (permalink)
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Smile Re: Diagnosed 30 Sept

Shawn,
Glad you have some good advice already. Truly sorry you have to be here, but stay positive, get a lot done now while you are physically able. Not having to stress over issues later will be a plus for you. ALS and kidney failure are two of the diseases that push right to the head of the line with SS disability and Medicare. ALS/MD clinics and the staff will guide you...they have had a lot of practice. They also can offer loaners of equipment. Take care. For anyone seeking support and comfort... The thread "Christians here for support" is an excellent source for all of us. God bless you...
Kaye
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