Old 02-09-2008, 12:13 AM #1 (permalink)
New Member
 
Join Date: 2008
City: san diego
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 36
taratune is on a distinguished road
taratune taratune is offline
New Member
Join Date: 2008
City: san diego
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 36
taratune is on a distinguished road
Default My brother was just diagnosed

Hello all,

My brother was just diagnosed yesterday with ALS. He was seen by his neurologist to get the results of a muscle biopsy that was done. He is suppose to see a ALS specialist in a few more weeks to find out more about his illness. From what he said the doctor will tell him what type of ALS that he has. I am curious to know more about the illness and how to help him. I am wondering if the muscle biopsy is definitive or if there are other things that should be done to make sure of what he had.
Thanks for any help,

Taratune
taratune is offline  
Old 02-09-2008, 04:15 PM #2 (permalink)
Extremely Helpful Member
 
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,205
brooksea is on a very distinguished road
brooksea brooksea is offline
Extremely Helpful Member
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,205
brooksea is on a very distinguished road
Default

Taratune,

Did he have nerve conduction and emg done? If not, he will at the specialist. I assume you mean he will be going to an ALS clinic?

Sorry about the diagnosed. Stick around and ask any questions you may have.
brooksea is offline  
Old 02-09-2008, 04:19 PM #3 (permalink)
Senior Member
 
Join Date: 2007
City: Tomball
State: Texas
Country: Uni
Interest: I have been diagnosed with ALS.
Posts: 949
Icanmanz is on a distinguished road
Icanmanz Icanmanz is offline
Senior Member
Join Date: 2007
City: Tomball
State: Texas
Country: Uni
Interest: I have been diagnosed with ALS.
Posts: 949
Icanmanz is on a distinguished road
Default

tara, so sorry for you and your brother. Lots of prayers your way, and God bless! Feel free to ask whatever you need to know.

Irma
Icanmanz is offline  
Old 02-09-2008, 11:35 PM #4 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

I would hope they did a lot of testing before doing a muscle biopsy. It's not usually in the first couple of rounds of tests.
AL.
Al is offline  
Old 02-10-2008, 07:32 AM #5 (permalink)
New Member
 
Join Date: 2007
City: austin
State: TX
Country: United States
Interest: I will helping care for my mom
Posts: 71
ccox is on a distinguished road
ccox ccox is offline
New Member
Join Date: 2007
City: austin
State: TX
Country: United States
Interest: I will helping care for my mom
Posts: 71
ccox is on a distinguished road
Default

I'm sorry you have to be here, but the folks here are very helpful and caring.
I'm sure your brother has had many more tests besides just the muscle biopsy and his neurologist was looking at exterior symptoms as well.
Honestly, just ask your brother how you can help. He will be the leader. You're a good brother for caring.
ccox is offline  
Old 02-11-2008, 01:23 AM #6 (permalink)
New Member
 
Join Date: 2008
City: san diego
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 36
taratune is on a distinguished road
taratune taratune is offline
New Member
Join Date: 2008
City: san diego
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 36
taratune is on a distinguished road
Question hello again

Sorry I guess I should have let you know that I am Tara, my brother's sister.

We think he has had an EMG , some blood work and the muscle biopsy. (My brother has a high functioning form of autism which limits some of his understanding of what is happening. He heard what the doctor said but doesn't believe it. He still thinks that he just has a pinched nerve in his back.)

His neurologist finally spoke briefly with our mother last week to tell her the diagnosis but we do not know what has been done and how certain the diagnosis is yet. He will be seen at ALS clinic at UCSD in a few weeks and we hope to learn more at that appointment. My mother reported that the doctor told her that if is was ALS....it is terminal....often within 2 years of being diagnosed...but the doctor also said something about....if it wasn't ALS it was something close to it......this seemed to keep the door open for the diagnosis to be something else....but what else....we don't know. My mom later thought that maybe this was just the doctor trying to give her some hope.

So we are still wondering what is going on. Wouldn't the muscle biopsy tell the doctor something specific? or is it just one part of the diagnosis? Any help you can offer in helping me to understand would be appreciated.

Thank you ahead of time for any help
Tara
taratune is offline  
Old 02-11-2008, 09:36 AM #7 (permalink)
Moderator
Forum Moderator
 
Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
CindyM CindyM is offline
Moderator
Forum Moderator

Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
Default

Hello Tara. Welcome to the forum. I am sorry to hear about your brother. Regarding your questions about the tests and so forth, the short answer is that there is no specific test for ALS. It is a process of ruling out other treatable conditions.

If your brother does turn out to have ALS, you will be doing him and the rest of your family a big service by learning all you can. This site is a good place to begin. You might start by doing a search from the tab at the top of this screen. Almost every topic related to ALS has been discussed at one point or another! Hope this helps, Cindy
CindyM is offline  
Old 02-12-2008, 12:52 AM #8 (permalink)
New Member
 
Join Date: 2008
City: san diego
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 36
taratune is on a distinguished road
taratune taratune is offline
New Member
Join Date: 2008
City: san diego
State: CA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 36
taratune is on a distinguished road
Default brother with new diagnosed

Thank you all for your support and encouragement. I have a lot to learn to help my brother. He can not read and has limitations.........so I will have to try to learn for him. I have learned from dealing with other issues the value of support forums like this one and already feel very lucky to have all of you to learn from.

Have any of you ever heard of late onset Tay-Sachs and a deficit of Hex A being implicated in ALS type symptoms?

Thanks so much.

Tara
taratune is offline  
Closed Thread

Tags
als, brother, confused, diagnose, diagnosed, muscle, muscle biopsy, neurologist

« Als | benign als »

Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
My Brother newly diagnosed flsister Newly Diagnosed 18 06-09-2015 03:19 PM
My brother.... Bad Balance Do I Have ALS? Is This ALS? 8 01-04-2011 05:49 AM
My Brother Wes mybrotherwes Current Caregivers (CALS) 10 09-19-2010 03:30 PM
Help for my brother! ccjjcc Do I Have ALS? Is This ALS? 19 08-18-2010 11:19 AM
My younger brother just diagnosed with ALS ksbigbrother General Discussion About ALS/MND 12 08-17-2010 02:58 PM
My brother Nannette In Memoriam/In Memory of 15 04-21-2010 01:52 PM
My brother..... lindasue General Discussion About ALS/MND 42 08-05-2007 06:59 PM
How to help brother with ALS luv2byte General Discussion About ALS/MND 4 01-01-2007 12:49 AM
29 yr. old brother rosales20 General Discussion About ALS/MND 2 02-27-2006 11:13 AM
Brother als 20 yrs, I'm recently diagnosed twospeed99 General Discussion About ALS/MND 18 07-27-2005 01:04 AM


All times are GMT -5. The time now is 08:40 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016