julita
08-27-2009, 04:58 PM
My husband might have brachial amyotrophic diplegia. Could someone out there please tell me what to expect. We are scared.
thank you in advanced
thank you in advanced
View Full Version : plese tell me about brachial amyotrophic diplegia
crystalkk
08-27-2009, 05:32 PM
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?
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?
julita
08-27-2009, 05:49 PM
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?
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?
Zaphoon
08-27-2009, 06:26 PM
"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!
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!
Danijela
09-02-2009, 06:30 AM
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?
tdamess
09-02-2009, 01:20 PM
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
achurgin
09-05-2009, 02:49 AM
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 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
candyo
01-06-2010, 08:59 PM
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.!!!!
Danijela
01-09-2010, 03:11 PM
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
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
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