Status
Not open for further replies.

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.
 
Sorry about the diagnosis but welcome aboard.

AL.
 
Welcome Amy. xoxo!
 
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!
 
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
 
How long have you been using Rilutek? Does it seem to help you? What side affects have you experienced?
 
So sorry about your diagnosis. Welcome to the forums.
 
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.
 
Hi Amy. Welcome. Im so sorry you have to be here but it is full of information.
 
Hi Amy! Sorry for your reason for being here... We're a pretty helpful group!

Jen
 
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.
 
hi amy welcome you will find much support and many friends here hugs
 
Status
Not open for further replies.
Back
Top