Status
Not open for further replies.

reznick

New member
Joined
Nov 9, 2013
Messages
2
Reason
PALS
Diagnosis
10/2013
Country
US
State
NC
City
Durham
I was diagnosed with ALS in Oct 2013 after experiencing difficulty lifting my right ring finger. It is now eight months later and my main symptoms are further weakness in my hands and arms. My neurologist recently mentioned that men who are diagnosed with ALS in their early 60's and have mostly symptoms in their hands and arms will deteriorate on a relatively slow trajectory, which he called the "bibrachial variant" of ALS. I am hoping to establish an ALS Bibrachial Variant discussion to help those of us who have this variant learn more about what to expect and how to prepare for the future.
 
Interestingly 3 recent posters with this diagnosis. Wonder if neuros are being more aggressive in defining this variant. See you share an IPAddress with another member. Is your wife a member too? Multiple accounts are forbidden but it is fine if you each are posting in your own voice which I believe is the case here. Welcome and good luck
 
Yes my wife is a member with her own voice. How do I contact the other posters who have mentioned the bibrachial variant?
 
One started a thread in newly diagnosed subforum. The other posted in the new members section at the bottom. Both were quite recent you should be able to find them if you read the most recent threads.
 
try forum search:


Showing results 1 to 7 of 7
Search took 0.01 seconds. Search: Keyword(s): bibrachial
Thread / Thread Starter Last Post Replies Views Forum
 
Synonyms include flail arm subtype, flail arm syndrome, FA variant ALS and [older term making a comeback] Vulpian-Bernhart syndrome and brachial diplegia. Here is latest abstract in Neurology, though this case is confined to arms and that is not the case with all FA variants.

Basically, though FA cases progress more slowly, there seems to be one group that stays arms-only long-term and possibly indefinitely (as reported in this abstract), whereas another group ultimately has weakness in legs and/or bulbar nerves affected but later in the disease course than is typical.
 
Interestingly 3 recent posters with this diagnosis. Wonder if neuros are being more aggressive in defining this variant. See you share an IPAddress with another member. Is your wife a member too? Multiple accounts are forbidden but it is fine if you each are posting in your own voice which I believe is the case here. Welcome and good luck
I'm one of them. I was diagnosed with bibrachial amyotrophic diparesis a few weeks ago. It seems to be more widely known as brachial amyotrophic diplegia. Both have the same acronym BAD. I'm 64 years old and was incorrectly diagnosed with MMN in January.

David
 
>I'm one of them. I was diagnosed with bibrachial amyotrophic diparesis a few weeks ago.

sorry for the diagnosed, but welcome to our club!

btw, your town is beautiful!

.
 

Attachments

  • DSC_6529 (2).jpg
    DSC_6529 (2).jpg
    308.5 KB · Views: 414
  • DSC_6536-2.jpg
    DSC_6536-2.jpg
    3.8 MB · Views: 533
Yep, I'm the guy who posted in newly diagnosed.

San Antonio is great. We moved here in the seventies and love it.

I oddly am comforted a bit by this diagnosis. When I thought I had MMN, I couldn't understand why my fingers, then wrists, then arms were weakening so fast. MMN generally proceeds very slowly. Now I know what's happening. As a misdiagnosed MMN patient, I was spending one week of every four at an infusion center for IVIG; I was there all day five days straight. Going there was a hassle, and, of course, it didn't work at all. But I had made friends there, so it was strange for that to be discontinued. And the chance that an effective treatment might be found for me evaporated with that diagnosis (There are other treatments for MMN besides IVIG that would have been tried next if I really had MMN.)

So now I'm taking my Rilutek, trying to learn about BAD, and taking each day as it comes.
 
>So now I'm taking my Rilutek, trying to learn about BAD, and taking each day as it comes.

-----
Good for you, there a several very active PLS folks here.


-----
Max - Monday, July 14, 2014 3:20:25 PM
-----
onset 9/2010, diagnosed by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Status
Not open for further replies.
Back
Top