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greenjeans

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PALS
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Lawrenceville
greenjeans has reported a post.

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hi---not sure how to do this--sorry if wrong
have been reading jimercat posts. i also go to Emory--refuse to go to clinic--what a circus.
went last week and they put me on lithium. so far so good. have they suggested it to you?
Post: Question about ALS Clinic
Forum: Do I Have ALS? Is This ALS?
Assigned Moderators: Al, CindyM

Posted by: jimercat
Original Content:
Jeff,

I can only give you information regarding my husband's experience at the Emory ALS Clinic in Atlanta.

When we were given the choice of going to Emory or staying with the neurologist that diagnosed my husband, we were told that all the specialists he would need to see would be at one location. Although he really wished he could continue with seeing his neurologist, he decided to go to Emory to save time, money and energy.

The Emory doctor was the fourth one seen by my husband regarding his illness. His GP diagnosed him with neurological "problem." Two neuros diagnosed him with ALS. And now the Emory doc. He examined my husband's reflexes and visually observed him after having extensively reviewed my husbands previous tests and records. He then gave us his diagnosed of ALS, agreeing with the other docs. After that all the specialists came in one at a time: neuromuscular research nurse for blood and trials participation info, speech language pathologist for swallowing and speech issues, occupational therapist for help with ADL, neuromuscular nurse clinician, social worker, rep from the MDA, and rep from the local ALS Assoc. The only thing missing were the hot dog and beer vendors! LOL Seriously, you will be there for a long while, so take some bottled water or something and a snack. Also bring reading material.

Jeff will you have anyone to take with you? If at all possible, take a close friend, you may need one.

I pray you are not diagnosed with this crap. Please let us know about you visit with the clinic.

Good Luck! Hopefully you will be able to change your screen name after the visit "lucksachangin!"
 

CindyM

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Learn about ALS
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Hello Greenjeans. I think you wanted to either start a thread or respond to something that Jimmercat or Jeff were posting. Either way, I think you will be fine. All I did was change the title of the thread so people would be more likely to respond.

Can I ask a question about why you don't wish to go back to the clinic? If you want to answer, just click on the button that says "Reply to thread" and then type in your thoughts in the box that comes up. WHen you are finished, click the button that says "submit reply" Hope this helps! Cindy
 

brooksea

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Hi greenjeans!

So we are neighbors! Add you to the list with another from Walnut Grove. Incredible!

To answer your question, yes my husband is on Lithium and I am happy to report some improved dexterity in his left hand - he is now able to type and write with it, whereas before he used is index finger to peck. Horrible cramping when yawning has diminished to almost none. His voice quality has improved. He's been on Lithium for 10 days (150mg x2/day). We are hesitant to get our hopes up, but I've seen with my own eyes and heard with my own ears!

Did you see Dr. Glass and Nicole? It is rather hard to sit and wait for all the specialists to visit with you, but the alternative is having to go from one doctors office to another, etc...

What was your experience there at Emory?

I will give Cindy my email address so you can email if you like, as I would like to get to know you neighbor!
 

greenjeans

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Messages
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Reason
PALS
Diagnosis
07/2005
Country
US
State
GA
City
Lawrenceville
clinic

HEY--Thanks for your help.
I still go to Emory to Dr only I go for regular visit not clinic. I hated being there all day and different people parading in and out questioning me. They seem to assume we should all be depressed constantly. I can be shy at times so I prefer to just see dr and come home. I am very very fortunate and have a great husband, kids, family, friends so don't feel I need to make polite conversation with all the social workers, etc.. It's just my preference.
 

brooksea

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Sorry for your bad experience at Emory! Are you recently diagnosed? If you don't want to travel all the way to Emory I can suggest an excellent Neurologist in Lawrenceville. He was the second doc we went to and he diagnosed ALS in my husband.

We considered staying with the doc in Lawrenceville, but my husband has Bulbar onset and his speech and swallowing are an issue. It is convenient for us to see everyone on one visit, even if it is a long visit.

My husband does not allow one speck of gloom and doom to enter that exam room! He keeps them all on their toes and I suspect they will not soon forget him! LOL

It can be depressing to see others that have advanced beyond where my husband is at, but the longer we deal with this diagnosis, the better we accept it.

Several weeks ago we met an amazing young man with ALS that lives west of Atlanta. His spirit and sense of humor inspired us and gave us hope that ALS or not you can do anything if you put your mind to it!

I wish you luck greenjeans! And please stick around the forum, there is plenty of information and suppport here!
 

greenjeans

New member
Joined
Oct 3, 2007
Messages
7
Reason
PALS
Diagnosis
07/2005
Country
US
State
GA
City
Lawrenceville
Emory

hey---Just heard from Nicole, my blood work looked good. Lithium is fine so far--yea!
Don't mind Dr Glass and love Nicole---they are very kind to us. I was diagnosed 7/11/05---right foot drop at the time.
Is your husband still taking Rillutek?
I'll stick around forum--THANKS! I'm not sure if posting right still, but will keep posting.
 

brooksea

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greenjeans,

you seem to have the hang of posting now!

Great you get to start lithium!

My husband had the rx for Rilutek, but after researching extensively, he decided against taking it.

Keep us informed, hope you see some improvements. Even the small ones are worth something!
 

northerngirl

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Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
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Kootenay
the hope pill

Welcome Greenjeans!
You are going to feel better just by joining the forum. These folk are great!
Good luck with the lithium or as we call it, the hope pill! :-D Mom's been taking it for a little over weeks.
 
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