Status
Not open for further replies.

pm2017

New member
Joined
May 22, 2017
Messages
9
Reason
Other
Country
US
State
TX
City
Sugar Land
Hi all,
My mom was diagnosed with Bulbar ALS in June of 2017. Her initial diagnosis was made by a specialist in Houston. We visited the Mayo clinic last week to get a second opinion where the doctor did some basic evaluation and made the same diagnosis. He suggested he didn't need to perform the EMG or any other tests again.
A part of us still hopes it's something else.
I have another appointment booked at John Hopkins with a neurologist later this month who wants to redo the EMG test. We can't decide if it would be worth going.
I wanted to hear your experience in terms of getting multiple doctor opinions. Have any of you had or heard of experience where the diagnosis by different doctors varied?
Thanks in advance for your input.
 
Hi, Sugar Land, very sorry to hear this news and to welcome you here.

Which clinic in Houston made the dx? Assuming affiliation with Baylor or UT, and as confirmed by Mayo after looking at the EMG and other test results, I would not see the need to schlep to Hopkins. Both docs said "ALS," without modifying as possible, probable, equivocal? What we recommend is two independent diagnoses, which it sounds like she has. I would use that time and energy for things that are more fun.

Best,
Laurie
 
Thanks Laurie.
The first diagnosis was at Houston Methodist Hospital. Yes, both doctors said ALS. :(

Best regards.
 
You are in good hands with Methodist and I can't imagine Hopkins changing the dx, your original question. Plan some travel or other things she likes. You will want to stay ahead of her needs, such as a feeding tube, BiPAP, speech assistance, but apart from that, you will want to help her to live as well as she can.
 
Thanks Laurie.
The first diagnosis was at Houston Methodist Hospital. Yes, both doctors said ALS. :(

Best regards.

Hi Sugarland, so sorry to hear this news. I too was diagnosed with Bulbar ALS at Houston Methodist, first at Sugarland then sent to main Houston Methodist Hospital where I underwent numerous tests to confirm the diagnosis. I have found the ALS Clinic to be most helpful. They get what I need very quickly and there is a whole team of specialists that see you. They told me to live life to the fullest and that is what I am trying to do. I pray for your Mother and you. You are not alone....
 
You are in good hands with Methodist and I can't imagine Hopkins changing the dx, your original question. Plan some travel or other things she likes. You will want to stay ahead of her needs, such as a feeding tube, BiPAP, speech assistance, but apart from that, you will want to help her to live as well as she can.
I would like to add one more thing. If she can still speak, I cannot, I suggest she record some messages for her family. Very important as the voice goes. I wish I had done this long ago. Best Wishes
 
Thank you Laurie and Nurse 321. I appreciate your advice and will try to do the same.

Nurse321, My prayers and best wishes to you. Hugs!
 
We saw 4 neurologist in total. The first Dr told my husband he thought it was something with his tongue, and to come back in six months.We ask for another Dr and the test begin.They all hinted at bulbar.Our last Dr specialized in Al's , he confirmed the diagnosis. So sorry about your Mom.
 
Hi Sugar Land. I am sorry about your mother's diagnosis. My wife was diagnoised 12/20/17 and we scrambled to get second opinions at the acclaimed clinics (Mayo @ Rochester, Johns Hopkins, Cleveland, etc.). These clinics booked us for appointments that were several weeks away so we took the advice from this forum and chose a local ALS qualitified center - the University of Virginia Medical Center. We are glad we did. For us it was important to enter a treatment regimen soonest and the confirmed diagnosis at UVA started that process. It amazes me how fast the Clinic started making things happen and with little effort (other than keeping track of home visits, etc.) on my part. We now have a breathing device, have appointments for installing feeding tubes, and are taking action on advice from this forum for roll in shower, Stair Chair, and possibly a power wheel chair. Stay with this forum. It's a good place.
 
Hi all,
My mom was diagnosed with Bulbar ALS in June of 2017. Her initial diagnosis was made by a specialist in Houston. We visited the Mayo clinic last week to get a second opinion where the doctor did some basic evaluation and made the same diagnosis. He suggested he didn't need to perform the EMG or any other tests again.
A part of us still hopes it's something else.
I have another appointment booked at John Hopkins with a neurologist later this month who wants to redo the EMG test. We can't decide if it would be worth going.
I wanted to hear your experience in terms of getting multiple doctor opinions. Have any of you had or heard of experience where the diagnosis by different doctors varied?
Thanks in advance for your input.
have heard of doctors having differing opinions on ALS diagnosis. In each of these cases ALS was confirmed. In our case we had no diagnosis until 15 months after first signs appeared.
 
Status
Not open for further replies.
Back
Top