Please help identify this medical condition
June 19, 2006 11:19 AM   Subscribe

My older brother was born with a medical condition that I would like more information about. Being from a third world country does not help finding a label or diagnosis for it, so I will try to explain it as best as I can and hopefully someone will pinpoint it. I have been a US resident for a while and I am unfortunately not with him to see a doctor and find the answers that I need. From what I know it is incurable but who knows, maybe there is something out there that can help him out.

As a baby he looked normal, but as he started growing up, he was not able to use neither his left hand nor left leg. It is not paralysis, but almost the opposite, tight muscles, as if the tendons are short, his hand as well as leg are shorter than his right ones, and the muscles are always tight, he can't even open his fingers unless forces it with his right hand.

Since there is not so much activity the muscles are smaller as well. From what I know from asking my mother, she said something about the midwife not helping him breath well when born. I can only assume that he was born normal but due to maybe lack of oxygen some damage happened.

I estimate his IQ as 95-100 SD 16, not as brilliant, tends to forget a lot, but everything else functions normally.
I am suspecting that it is a common medical condition because I have seen a person with exact conditions before.

He is now in his 40's and he has seen a doctor that performed a surgery to extend his tendons, on both arm and leg, to release some of the pressure, and he underwent a long physical therapy, unfortunatly the improvement was very minimal.

Thank you.
posted by convex to Health & Fitness (11 answers total) 1 user marked this as a favorite
Hemiplegic cerebral palsy? Cerebral palsy is extremely common.
posted by empyrean at 11:23 AM on June 19, 2006

I am not a doctor. I second the possibility of cerebral palsy. It is often correlated with the mild developmental delay that you might be describing.

The tendon surgery is common for people with CP. This is especially possible if you remember him walking on his toes before the surgery.
posted by benrodian at 11:27 AM on June 19, 2006

What you describe is called 'arthrogryposis'. Hopefully that's a good starting point for your information search.
posted by ikkyu2 at 11:28 AM on June 19, 2006

[IIADBNYD (I Am A Doctor But Not Your Doctor).]

Sounds like empyrean got it, hemiplegic CP, unlikely to be arthrogryposis. Arthrogryposis is more of a condition where the joints don't develop well in utero, due to decreased fetal movements, which is rarely a unilateral phenomenon.

Instead, this sounds like your brother suffered an insult to the right side of his brain -- a stroke of some sort, most likely -- that caused it to have decreased oxygenation and tissue damage. That prevented him from being able to use the left half of his body as normal, and the sequelae of all that is what you now see, the muscle contractures.

One bit of info: cerebral palsy is, by definition, a static condition -- as in, it's a condition wherein the injury or insult was a one-time phenomenon which is not ongoing. It says nearly nothing about how severe the injury or insult was, nor does it speak to what functionality is impaired or lost. Most people think of cerebral palsy as the same as mental retardation (hence, in the medical world, the catch-all term "MRCP" which gives me a stress headache); it's not. There are literally millions of people out there who have mild CP and are brilliant, but with mild, moderate, or even severe motor deficiencies. It just so happens that a more significant event -- e.g., a global stroke, or a prolonged anoxic event -- will likely cause both motor and cognitive deficits, and thus a lot of the more noticeable/recognizable people with CP also have some element of mental retardation. But that's not absolute, and in reality, is actually true much less that most people would think.

So back on your brother: it's likely that he had an event, probably during birth (since that's by far the riskiest time of the fetal/birth/infancy period), that caused him to have a moderate stroke affecting the motor portion of the right side of his brain. This led to a static hemiplegia of his left side, something that's difficult to impossible to "fix" but also isn't going to progress.
posted by delfuego at 11:38 AM on June 19, 2006

delfuego, thanks. So it can be what my mother mentioned about the midwife that might have caused that. I don't know the details what happened then, but could it be?
posted by convex at 12:10 PM on June 19, 2006

When I see my brother I would like to sit with him and explain to him what might have happened that night when he was born. I don't want him to continue thinking it is a curse from God as they made him believe, and let him know that is it common and there are many people out there like him. To do that I am trying to figure that out myself first.
posted by convex at 12:19 PM on June 19, 2006

My mother has hemiplegic CP. Her right side is compromised (therefore the stroke occured in her left brain) and apparently the right brain took over all the left brain's functions, or something like that. She's very intelligent, and very beautiful despite a pronounced limp and useless right hand. I'm not sure what her muscle tone was like as a child, but as a 66-year old adult, I would say that it is the opposite of your brothers--complete atrophy without tightening. My mother's parents did nothing about it when she was young, and as a result she believed she had had polio as a baby, until a few years ago. (I always thought she had CP, but since she associated CP with mental retardation she thought I was being insulting!) The way I explained it to her (and what delfuego said) was that she had a stroke at birth. I know I am not providing any new info about your brother's condition but I thought I would tell you about a wonderful woman with CP who has led a full life, complete with loving marriage and child.
posted by chelseagirl at 12:52 PM on June 19, 2006

I don't want him to continue thinking it is a curse from God as they made him believe, and let him know that is it common and there are many people out there like him. To do that I am trying to figure that out myself first.

Man, that is awful. You're a good brother.
posted by evariste at 1:10 PM on June 19, 2006

Convex: hopefully delfuego's medical advice and chelseagirl's excellent personal insight has helped to explain your brother's condition, and to let you know that CP can simply manifest as a physical impairment. When I was a student at a large, well-respected public university, I studied alongside more than a few individuals with varying physical CP symptoms -- from a limp or limited use of appendages to a lack of muscle control that renders one wheelchair-bound. For all of them, their corporeal condition had no effect whatsoever on their mental condition, and every person that I met intellectually "deserved" to be there. Regardless, it was obvious that more than a few people saw a physical condition and thought "retarded."

95--100 is a completely average IQ -- as you said, not brilliant, but comparable to most out there. It is important for your brother to know that his condition is not necessarily one of mental retardation. Also, I'm not sure how to do this, or even how to prove it, but it is important for him to know that his condition is not punishment or a curse from God, and that many people out there have had similar experiences. I'm not familiar with the organization, but a quick Google search found United Cerebral Palsy. Perhaps they can offer more, better help.
posted by penchant at 1:29 PM on June 19, 2006 [1 favorite]

Thank you all. Chelseagirl, penchant and others.
It will probably be a year or so before I meet my brother again. He is not being treated fairly back home, my family is not patient and fair to him including my mother. I can't begin to tell how much pain I know he suffers daily, and I hate my family for that, but what can I do, I can't even speak to him on the phone. I miss my brother and I believe he deserves to live a better life..
It is hard to talk about him, I feel like crying and I am at work.
posted by convex at 2:15 PM on June 19, 2006

convex: I was going to post my agreement with evariste. You're one hell of a brother. Just don't be too quick to hate your family for it. It's not an easy situation for anyone. Focus on what your brother needs and all strength to you in dealing with that.

There's no deserving to it, other than every one in that situation deserves you as a brother.
posted by edd at 4:56 PM on June 19, 2006

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