Status
Not open for further replies.

taratune

Active member
Joined
Feb 9, 2008
Messages
35
Reason
Loved one DX
Country
US
State
CA
City
san diego
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. :confused:
Thanks for any help,

Taratune
 

brooksea

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

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
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
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
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.
 

ccox

Active member
Joined
May 30, 2007
Messages
71
Country
US
State
TX
City
austin
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.
 

taratune

Active member
Joined
Feb 9, 2008
Messages
35
Reason
Loved one DX
Country
US
State
CA
City
san diego
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
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Tara. Welcome to the forum. I am sorry to hear about your brother. :cry: 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
 

taratune

Active member
Joined
Feb 9, 2008
Messages
35
Reason
Loved one DX
Country
US
State
CA
City
san diego
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
 
Status
Not open for further replies.
Top