AdBlock Detected

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience and to help support our community please take a moment to disable your AdBlocker.

Status
Not open for further replies.

guido00

New member
Joined
Sep 15, 2011
Messages
6
Reason
PALS
Diagnosis
09/2011
Country
US
State
GA
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.
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
985
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
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:)
 

guido00

New member
Joined
Sep 15, 2011
Messages
6
Reason
PALS
Diagnosis
09/2011
Country
US
State
GA
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.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
Shawn, sorry to hear about your diagnosis, but welcome to the forum...
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
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!
 

susanf

Senior member
Joined
May 26, 2011
Messages
647
Reason
PALS
Diagnosis
06/2011
Country
US
State
fl
Hi Shawn, mine started the same way too. Did they mention any trials you can get into?
 

TedH5

Very helpful member
Joined
May 17, 2010
Messages
1,142
Reason
PALS
Diagnosis
08/2010
Country
US
State
GA
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!
 

guido00

New member
Joined
Sep 15, 2011
Messages
6
Reason
PALS
Diagnosis
09/2011
Country
US
State
GA
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...
 

Felica

Distinguished member
Joined
Nov 15, 2011
Messages
116
Diagnosis
06/2011
Country
US
State
Al
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
 

guido00

New member
Joined
Sep 15, 2011
Messages
6
Reason
PALS
Diagnosis
09/2011
Country
US
State
GA
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!
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
Hi Shawn, sorry about your diagnosis. Welcome. I've stopped in your town many times to see your air museum. Hope we can help.

AL.
 

hke2000

Member
Joined
Sep 4, 2010
Messages
10
Reason
CALS
Diagnosis
7/2010
Country
rth
State
trk
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.
Hülya
 

Georgia Peach

Distinguished member
Joined
Mar 26, 2011
Messages
292
Diagnosis
02/2011
Country
US
State
GA
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.
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
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.
 

ScarlettK

Active member
Joined
May 27, 2011
Messages
85
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
TN
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
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock