going to an als specialist

Status
Not open for further replies.

pldo

Distinguished member
Joined
May 30, 2007
Messages
146
Reason
PALS
Country
uni
State
unknown
City
unknown
I finally got an appointment with an als clinic here. I am so nervous- it is in a few weeks but I guess that will put this all to rest- or they will tell me I need more testing? What should I expect? What questions should I ask?

Thank you all for being here!
 

brooksea

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

Glad you now have appointment with ALS clinic!

Could you tell us which clinic? At Emory in Atlanta, everyone comes to you in the exam room and this is an all day deal as they see other patients too kinda in assembly line fashion. But they are proficient and efficient.

I would suggest you maybe read the info on the front of this forum, if you haven't yet. It might help you formulate questions for your visit. Also, I would right down every symptom so you don't forget if you get anxious during your visit.

Take something to eat and drink and read. Take your husband or a close friend.

Others can help further I think.

CJ
 

pldo

Distinguished member
Joined
May 30, 2007
Messages
146
Reason
PALS
Country
uni
State
unknown
City
unknown
I am going to the one at Emory- they seemed very nice on the phone. What do they do during your first appointment?
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
YOu will have just about everything done..

About 20 tubes of blood, maybe a spinal tap.... you will have an EMG for sure, maybe an MRI.

Make sure you bring all your medical records for the last few YEARS.

When you leave there, you will have a good idea of what's going on.

I don't go there, but most ALS clinics are the same.

rgds,

Jamie
 

brooksea

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

My husband had already been thoroughly tested by one of the best neuros in Atlanta and this was to be his 3rd opinion at Emory, so I can only tell you what we did. The original results of all testing were sent to Emory before our appointment. Basically that info was reviewed by Dr. Glass and he concurred with the diagnosis. :evil:

A resident interviewed my husband first (if you get one be patient with them - my husband was ready to tear her a new one!). Then we saw the Speech Lang. Path., Social Worker, Nurse, Research Nurse , Dietitian, Occupational Therapist, Pulmonology, and ALS Assoc. Rep. (not necessarily in that order.) Dr. Glass came in last to give us the news...

All of this takes quite a long time so be prepared. If you haven't had the blood tests, nerve conduction studies and emg done then I would suspect you should be prepared to do so.

These people are extremely caring.

Again, you need to bring someone that can support you along.

Would you mind telling me when your appmt. is? We go back on 07/13.

If you would like - PM me.

Anyone else care to share there experiences at Emory? Rhonda? Conrad?
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
I went to Houston Methodist and it was pretty much the same procedure. They must follow the same protocols....

Good luck....we'll be praying for you.

rgds,

jamie
 

lhagsjr

Distinguished member
Joined
Apr 25, 2007
Messages
173
Country
US
State
PA
City
Philadelphia
Jamie

You have been to an ALS clinic and still do not have answers? Did they even give you a guess? Did u straight up ask them about ALS?
 

pldo

Distinguished member
Joined
May 30, 2007
Messages
146
Reason
PALS
Country
uni
State
unknown
City
unknown
No I went to a regular neuro and they could not say anything and really did not do muh testing- just basic reflexes and stuff. Thei said they would order an mri if I was still not feeling well in 3 months but I want answers sooner than that.
 
Status
Not open for further replies.
Top