A couple of Questions

Status
Not open for further replies.

mpnatx

Distinguished member
Joined
Aug 5, 2014
Messages
372
Reason
PALS
Diagnosis
11/2014
Country
US
State
Texas
City
Austin
Hi,
I recently was diagnosed with ALS or MMN as I posted a couple of weeks ago. I've been referred to the University of Texas Medical and have an appointment in a few weeks. All my records have been sent there.
My questions is, has anyone had experience with UT medical? Also, does anyone know what I can expect? This specialist only sees one person a day.
I would imagine I am going to go through the EMG etc. again.
Just wondering..
Thank you in advance,
Marty
 
The doctor might not do another EMG, if the first is clear and thorough.
 
Perhaps the doctor doesn't spend the whole day with you, but rather the whole ALS team. That did take a whole day by the time we saw the neurologist, pulmonologist , social worker, dietician, respiratory therapist, physical therapist, occupational therapist, the nurse, the speech therapist- and probably more that I've forgotten. It was long, exhausting and overwhelming. Be sure to take someone with you to take notes because you will get SO much information, you need another pair of ears and a recorder to review afterwards. It helps to go in with a list of questions as well- and I suggest your list be divided into who will best answer the questions so you aren't duplicating questions in areas not in their expertise! For example, my hubby was determined to continue his rigorous exercise programs- so he asked everyone we saw that day if that wasn't a great idea, hoping to get someone to answer the way he wanted them to. (Like the speech therapist is an expert on exercise!). Now I understand that he was still struggling with his diagnosis and wanted to still be "normal!" Know this is a tough time as you struggle with what this all means. Good luck. Donna
 
These faciculations feel like the little pac man things taking constant little bites out of the insulation of my nerves. Constant and more active in the morning.
Marty
 
Status
Not open for further replies.
Back
Top