update on my diagnosis

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amyst

Member
Joined
May 4, 2012
Messages
23
Reason
PALS
Diagnosis
03/2012
Country
US
State
tennessee
City
my town
Hi, I posted last week about best als clinics.

Well, last Tuesday I got a call from Vanderbilt telling me I can come in Thursdy to see Dr. Donofrio.
After feeling frustrated that I had to wait weeks, now I wasn't sure if I was ready in two days. After a frantic afternoon tuesday planning with my husband we confirmed the appointment.

First I want to say everybody was very supportive and made me feel comfortable without being really obvious. From the person at the front desk, I believe her name is liegh, to the nurse, can't think of her name but she has definitely found her calling. She handled the anxious situation just right.
Dr. Donofrio was great as well. His mild calm manner helped put me at ease. He did an extensive neurologic exam. When he left the room for me to get dressed and review my other tests is when my anxiety hit the roof.
I'm very thankful to have my husband and mother to sit with me. As I told them, I felt like I was waiting on a jury to decide if I will be given the death sentence for a crime I didnt commit.

He returned and calmy told me he agreed with the other neurologist findings. He told me about the clinic and I know we discussed other things, but it really is a blur. He still wants to do his on emg and so we scheduled for the end of this month. I dread the test but feel very relieved he is doing it himself.
I can say if anybody is looking for an ALS clinic in TN, Dr. Donofrio at Vanderbilt is highly recommended by me.
Anyway, I guess I`m here to stay.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sorry about the diagnosis but welcome aboard.

AL.
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
Welcome Amy. xoxo!
 

glupavomomiche

Distinguished member
Joined
Sep 25, 2011
Messages
272
Reason
PALS
Diagnosis
09/2011
Country
US
State
Texas
City
Podunk
So sorry the diagnosis was confirmed. At least he had the courtesy to come back and tell you after you got dressed. My last opinion doctor (who I still see) let me know her agreement by asking if I needed a refill for Rilutek as she left the room! Anyways...

Welcome! This forum is an absolutely lifesaver. We're here for you!
 

ltbeauti

Distinguished member
Joined
Feb 22, 2011
Messages
215
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Chester
Hi Amy,

So sorry for the diagnosed, but glad that you found us.
My first and second EMG's did not show any real "criteria for ALS", but that was years ago. I do not wish to have another one. When I had those done, my only symptoms were bulbar, now I have hands and legs affected.

I am happy to hear that the doc will be doing the test. I had one by a "intern' or something. wasn't very nice.

Again WELCOME
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
How long have you been using Rilutek? Does it seem to help you? What side affects have you experienced?
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So sorry about your diagnosis. Welcome to the forums.
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
So sorry Amy about your diagnosis. Welcome to the family. But sorry you need to be here as are the rest of us. But family we try to be.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
Hi Amy. Welcome. Im so sorry you have to be here but it is full of information.
 

panguinjen

Senior member
Joined
Mar 27, 2012
Messages
523
Reason
Lost a loved one
Country
US
State
CA
City
Stockton
Hi Amy! Sorry for your reason for being here... We're a pretty helpful group!

Jen
 

amyst

Member
Joined
May 4, 2012
Messages
23
Reason
PALS
Diagnosis
03/2012
Country
US
State
tennessee
City
my town
Thank you all for the welcome. I'm sorry there is a need for this site. But there is so I'm thankful for it. There really is so much helpful information. and reading from people that really know what I'm experiencing.
It's been a rough day today. Argued with husband a lot and it was strange. I feel bad. I know he will be taking care of me. We are trying to make major decisions to get prepared. I feel disconnected. Everything is different now. The future so different and scary now. I have no ideal how we will get used to this but it's not a choice. Maybe I should be in the rant section, I don't know. I just wanted to reply and say thanks.
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,287
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
ma.
City
halifax
hi amy welcome you will find much support and many friends here hugs
 
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