plese tell me about brachial amyotrophic diplegia

Status
Not open for further replies.

julita

New member
Joined
Aug 27, 2009
Messages
2
Country
US
State
midwest
City
midwest
My husband might have brachial amyotrophic diplegia. Could someone out there please tell me what to expect. We are scared.
thank you in advanced
 
Welcome to the forum, sorry that you have to be here.

I am not a dr but from what I understand it is an extremely slow form of MND thats stays in the upper limbs, it does not effect the lower limbs, breathing, or cranial nerves. Another term for it is "Man in a Barrel".

What are your husbands symptoms?
 
Thank you for your response.
My husband has lost strength in his left arm/and and has also lost his muscles. His arm is very skinny. His rigth arm is beginning to loose muscle mass as well and it is getting weaker. He has muscle spasms all over his body, cramping and his overall energy level has gotten low. He is only 35. I've been reading about the "man in a barrel syndrome" also refered to as the flail arm syndrome. Is it a form of ALS or no?
 
"Man in a barrel!" What will they think of next? What a way to describe a disease!

ALS is in the category of Motor Neuron Diseases, seperate from all others. It is distinctive in that it involves both upper and lower motor neuron dysfunction/death.

It has various forms like Bulbar or limb onset and progression can vary from rapid to slow. It effects the entire body (arms, hands, legs, feet, speech, breathing).

"Man In A Barrel" may be a form of MND but is seperate from ALS. This is my understanding. Someone spank me if I've gotten this wrong!

Zaphoon

P.S.
I'm off to Georgia to visit Wyatt for the first time!
 
Last edited:
From what I know, it is very rare, slow progressing and with a better life expectancy than ALS. Most medical professionals agree that it is a form of motor neuron disease, and they refer to it as 'a variant'. How long has it taken for your husband to progress to where he is now? Has he got any symptoms of upper motor neuron damage, such as brisk reflexes or spasticity?
 
i am curious also as my son's 2nd opinon doctor spoke of this as it is only his left arm also but has twitching all over body the doctor is redoing all test and giving him threapy for his arm but don't see him for another 3 month's but his thinking has let me breath a little better it still maybe be als but i am hoping for flail arm if he has to have any of this at all he is 37 yrs old and he get cramp's in his calf's, for a few yrs nowbut, that could be his thyroid as he didn't take his med's for thyroid but, he is now
 
I was diagnosed in 1975 with MND then changed to SMA, then changed to possible Kuckelberg-Weillander (sp?), then back to SMA, and finally in 2002 to Brachial Amyotrophic Diplegia. I was about 32 years old in 1975 and now I am 65. BAD is a motor neuron disease that is very slow moving and affects the shoulder girdle and arms. My DRs. say it will not be the cause of my passing.

I have entertained many fasciculations (twitching) over my entire body from face to calves. I now have atrophy in my hands, biceps, shoulder blades, pectoral muscles. I am still using the muscles that I own and refuse to give this affliction an easy fight. Even DRs get it wrong and are human so have faith. I exercise on a treadmill at least 1-2 miles a day. I get frustrated because I love being physical. I do lite stretching exercises daily. Eat healthy, exercise in moderation and love your life! Best wishes to you......I welcome others who wish to exchange notes. I would love to chat with someone who BAD or actually, anyone else. Al in Cal
 
I was dagnosed with "ALS" in 2000 after multiple tests, (you all know the routine) declining with each yearly visit. past 2 years no progression. (YEAH!) Now am told B.A.D. spinal muscular atrophy. guess this is a good thing! I'm ok being B.A.D.!
 
Hi,

I thought that SMA and BAD were two different entities on the spectrum of neurological conditions. Are they the same thing? Great news about your non - progression. Presumably, upon your diagnosis you have shown some upper motor neuron symptoms (brisk reflexes, spasticity?) in order to be diagnosed with ALS. Or did you have just lower motor neuron symptoms? (in which case it could have been seen as PMA - Progressive Muscular Atrophy).

I am just curious, as cases like this offer hope and demonstrate how complex the condition is.

Best wishes, Dani
 
Here is an older thread with info that Mary was looking into.
 
Thanks Lori - there is an amazing dearth of information on BAD - like the incidence of it in the general population, the morbidity factor, the probability of it turning into ALS, how it will ultimately affect the ADLs, stuff like that...I like to know everything I can to help me understand what I am confronting and this seems not likely with this disease...I am a teacher and big on knowledge and planning when possible

Mary
 
Al were you able to carry on working & do you still get about. Do or Did you have coughing episodes.

Gary
 
Hi Gary Ward!

I have had a MND problem since about 1975.
I have been able to function normally except for the last year I noticed my arms losing power. I am now 67 an normal aging but one knows when one's muscles are starting to fail more.

I don't have coughing episodes. I have recently discovered swallowing my food and drink is getting a little annoying. Larger pills don't go down so easily. This is a concern different from BAD. I was told that this MND is rare. My CAD will probably get me before the BAD. Humor and good attitude will push longevity.

warm regards,

Al
 
Status
Not open for further replies.
Back
Top