brachial amyotrophic diplegia?

[maryhahnward]

Does anyone on the board know anything about brachial amyotrophic diplegia? My husband's neurologist told him this is what he has and that it is a rare variant of ALS.

Thank you for any information you can give us.

Mary

 

[sadiemae]

I read this is also called"man in the barrel" disease. Maybe by giggling that you can find more. HUGS Lori

 

[trfogey]

Brachial amyotrophic diplegia -- a lower motor neuron disorder of the arms. Slowly progressive, characterized by increasing weakness and muscle atrophy of the arms with the shoulder affected quicker and more severely than the elbow. Unfortunately, no guarantee that it won't turn into full-blown ALS over time as it did for me.

Not a lot of information online because it is rare. Since you are in Durham, I assume you have been (or soon will be) seeing Dr. Bedlack and crew at the Duke ALS clinic. Great group of folks -- I've been their patient for three years and I am very happy with them.

 

[maryhahnward]

Yes, we have seen Dr. Bedlack after seeing, as he says, anyone worth seeing on the East Coast. We really like him and felt he was the most compassionate of all of the neuro's. He said he has not had many patients with B.A.D. and that is rare. In fact I do believe he said he only had one other in his practice. Our concern is that it will turn into full blown ALS though it would not surprise us either....I'm sorry yours turned into ALS...how long did you have BAD before it became ALS?

 

[maryhahnward]

Lori,

Man in the barrel is such a weird name for it isn't it? Wonder who came up with that description....

Mary

 

[trfogey]

My diagnosis was BAD for about a year and a half, until I started developing weakness in my respiratory muscles. Even today, three and a half years past the start of overt LMN symptoms in my arms, I still have some use of my arms and my legs are only now beginning to show the first signs of weakness.

As to the "man-in-the-barrel" description, if you see a photograph of someone with BAD, you'll have no doubt why that description came along.

 

[maryhahnward]

Thank you for sharing your information with me. My husband's chest and shoulder muscles are weak. It appears his pectorals have atrophied. He also can not laugh or cough hard without passing out. He has had a spirometer test and did okay with it. He has also had a full cardiac work up in case it was related to his heart. We suspect it is the beginning of respiratory problems related to the disease.

I can see why they call it man in the barrel, I see they also call it flail arm syndrome, not sure I like either name.

 

[Katie C]

Dr North referred to Glen's as "man in the barrel" also... and it IS very accurate and descriptive. Seems like if there was a rare variant, Glen managed to find it since he also has full blown FTD. Sheesh!

 

[lgelb]

Larry is diagnosed with the flail arm variant. He may have all of you beat for rareness since he was born with Marfan Syndrome and there are no other recorded cases of Marfan + ALS.

He has weakening legs/core now, roughly 2y since arm problems began.

 

[CAHPAH]

Serena went to the Mayo clinic for a second opinion after her diagnosed and they said she could possibly have BAD (Also call flailing arm) She certainly fits the name. We are going on three years since her diagnosed and she can still walk, talk and swallow fine but her arms simply hang there. However 2009 took 70% of her lung capacity and she has a lot of cramps and twitching in her legs so we can't say other limbs arn't effected.