Old 10-21-2012, 03:30 AM #1 (permalink)
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Exclamation Congenital Hemiatrophy

hi, i'm Naila, 24 years of age and was diagnosed of having Congenital Hemiatrophy.
until now i still don't know what it means. when i was 18 years old, i started experiencing severe muscle pain on the right side of my body. few months later, i noticed half of my body is shrinking especially my right leg.
i went to a neuro and undergone EMG NCV. the doctor told me that my muscles are too weak. i took COQ10, but it seems to be not working, now i only weigh 39kls.
can someone help me on this. today i am suffering from severe muscle pain and weakness.
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Old 10-21-2012, 08:37 AM #2 (permalink)
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Default Re: Congenital Hemiatrophy

Hi, Naila. I'm not sure how you landed here, but here is your condition in layman english:

Congenital means that a problem existed before you were born, was caused as you were being born, or set in in the first month of your life. It's a big word to say "you were born with this".

Hemi means that the problem happens on one side of the body. If you think of paraplegia as splitting the body in half verticaly, hemi is when it is split horizontally. So the symptoms happen just on the left or the right side of the body.

Atrophy is the wasting away of your muscles, that muscle shrinking you are experiencing.

I have no background at all in the details of hemiatrophy, a quick read makes it seem poorly understood and not very treatable. What did your doctor suggest to do next? Have you gotten to work with a physical or occupation therapist? Hemiatrophy seems pretty rare, but hemiparesis (weakness) and hemiplegia (paralysis) are not and at least in the USA they make specialized equipment for people with hemi-disabilties. In particular, they make wheelchairs where the handrims to control both wheels are on one side of the wheelchair so it can be driven one handed, usually with a spot for your strong foot to push along, too. I think that's what I would be looking for, in your situation.
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Old 10-21-2012, 09:37 AM #3 (permalink)
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Default Re: Congenital Hemiatrophy

Hi Naila, I'm sorry I don't know anything about your condition, but hope you find some answers... I don't think CoQ10 is going to stop any progression; are you taking any meds for the pain from your doctor?
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Old 10-21-2012, 12:13 PM #4 (permalink)
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Default Re: Congenital Hemiatrophy

You could try a site that has many conditions like www.patientslikeme.com
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Old 10-21-2012, 03:05 PM #5 (permalink)
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Default Re: Congenital Hemiatrophy

Were you given a second opinion?

Are they treating you for your condition at all? I'm sorry, like the others, I know nothing about it, but if you're having pain from spasms and contractures, those can be treated.

Are they doing exercises to keep range of motion in your joints? Your doctor should describe your condition and what it means to you.
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Old 10-21-2012, 11:15 PM #6 (permalink)
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Default Re: Congenital Hemiatrophy

i really don't believe i was born with this because i just started to feel muscle pain when i was 18..my doctor prescribed me with Prednisone, seems not to be working also..today i will see another doctor for second opinion..
i don't have any pain killers, i just lay down most of the time when i'm in pain..
i never had any good explanation regarding this Congenital Hemiatrophy, i tried searching the internet for any medications, and unfortunately this kind of disease is not treatable.
i'm so much worried because i have a daughter, and i fear that in her future life she will also experience this. i also had a miscarriage last March and the doctors are still researching if it has something to with this..
i hope the doctor i will be seeing today will explain much about this..

i really appreciate all of you for taking the time to reply to me..
i will include you in my prayers.. i know God will hear us, not today , but i know it will very soon..
God bless you all stay strong..
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Old 10-22-2012, 05:06 AM #7 (permalink)
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Default Re: Congenital Hemiatrophy

Good luck with your appointment today, Naila. I hope the doc you see today can give you some answers.
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Old 10-22-2012, 08:02 AM #8 (permalink)
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Default Re: Congenital Hemiatrophy

Quote:
Originally Posted by naila1131 View Post
i really don't believe i was born with this because i just started to feel muscle pain when i was 18..
Oh, I see your confusion. You can be born with something that takes a while to develop. My own upper motor neuron disease is the result of a bad gene that I was born with. The gene is like a blueprint to tell my body how to build something called a mitochondria. Mine were supposed to be recycling certain things that they didn't, and over time somehow that causes HSP.

So I was born with it, but I didn't show symptoms until I was 14. Even looking back, other than being clumsy and very untalented at athletics I have nothing out of place I can remember before 11, and that's reaching. The real pain and disablity didn't set in until my late teens.

So yes, you can be born with something that you don't notice until you are 18, that is very possible indeed. Does that make sense?
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