Crawling on knees

[wheelchair teen]

I am 17 and I have a disability which is progressive, and i've gradulay lost the ability to walk or stand, i use a wheelchair full time, however i still currently have some movement in the top of my legs allowing me to walk on my knees or crawl around the house. I have been crawling for about 8 months now, and i walk on my knees everyday, quite often, it is sometimes seeming more difficult, but do you think i am doing the right thing in crawling, as my only other option is a wheelchair all of the time, i think its good to use the bit of my legs which still work to keep them mobile, but am i doing serious long term damage??

If i don't use them i will loose the use of them for definate and the muscles will waste, but if i do i may eventually loose the use anyway with perhaps a lot more pain, and added problems from long term damage. What should i do??

[JainMD]

Hi,
I can understand what you would be feeling from being a active person to now being restricted to wheel chair.
I indeed think it is neuromuscular disorder like Duchene-Muscular dystrophy or Becker-Muscular dystrophy.
You should be consulting a neurologist or a neuro-muscular specialist.
A biopsy of quadriceps muscle is must to identify the lesion.
NCV test are necessary for further evaluation.
Keep me posted.
Bye.

[wheelchair teen]

Thank you again for your reply.

I started having problems when i was about 14 years old thats when i first noticed something was wrong (i'm now 17) . It started where i stuggled running fast. Then friends noticed i allways walked slow, and could never keep up. I developed a limp, and walked with my hips rotated in to give me enough support to stand. I eventually needed crutches, at first i could walk with them, and used a wheelchair long disatance. But i got so i had to drag my legs through my crutches and i ended up needing a wheelchair all of the time.

I haven't had a muscle biopsy. But i've had a MRI brain scan which was all clear. I have had a MRI spine scan, which i haven't yet the results and i'm going for an EMG nerve test soon.

I don't really have that much muscle waisting, although my feet arches have got slightly higher,  and around my ankles and feet has lost musle. i have what i think is called foot drop on both feet, and have had AFO's made for my legs. I have numbness in my ankles and feet. I can't feel my elbows at all, (and i actually injured my elbow, and didn't realise till i saw the blood), and my forarms arm numb. I also have numbness in my wrists and the side of my hands. I get pins and needles a lot.

I have also had muscle twitches all over my body, from my feet to my eyes, and cheeks. Something else that everyone has noticed is i allways have icey cold feet, even with warm socks etc, they are allways cold, my hands also seem to get quite cold.

[JainMD]

Hi,
How are you feeling?
I think you are having myopathy which is of progressive kind and which has restricted you to wheel chair. It is indeed a neuro-muscular disorder.
Has any muscle biopsy being done?
I asked for some information as to diagnose what condition it might be.
Keep me posted if you have any queries.
Bye.

[wheelchair teen]

Thank you for your reply. I don't have a name to my condition at the moment, so i am open to suggestions of what it could be.

[JainMD]

Hi,
What is your name?
What have you been diagnosed with? Did you have such crippling disease since birth?
I think you are myopathy which is of progressive kind and has restricted you to wheel chair.
You should avoid crawling as that would injure your knee badly and you would tend to develop bruising.
Instead you can take help of physiotherapist who would be doing active and passive range of exercises around your joints to help you in avoiding disuse atrophy of muscle.
You should be considering seeing a physiotherapist at earliest to help you with your disease and immediate intervention if needed.
Keep me posted.
Bye.