Pls Help! Lipid Storage Myopathy.

Angeline angeline_yam at yahoo.com
Thu Jul 20 02:23:15 EST 2000


Hi all..

I've discovered to have Lipid Storage Myopathy about 4 years ago. A muscle
disease that DO NOT enable my muscle adsorbs the fat and turn them into
energy. Anything that is slightly strengous and I will feel extremely
breathless and exhasuted. (Eg...feeling very breathless walking for even 5
mins).

However, I have taken carnitine together with vitamin B2 tablets as my
medication for the past 4 years since recommended by my doctor....

But lately, there seems to be some cramps discomfort in my legs. After 5
mins of normal walking, my legs will begin to feel as if I'm having bad leg
cramps., my flesh pulling themselves inside beneath the skin, and it hurts
terribly with every further step that I take.  However, this time I don't
feel breathless anymore as in 4 years ago. Just the bad cramps in my legs.
It has been like this for the past 3 weeks only. I thought I didn't take
enough dosage of carnitine since once in a while I might forget to take my
medication due to forgetfulness. But for the past 3 weeks, I've been very
diligent on taking my carnitine and b2 tablets.

Does anyone has any help or advice ? Or encounter into such muscle diseases
like mine ? Please help..as it is hindering into my daily life, to work ,
for lunch or even just taking a stroll to nearby stores. Any help will be
greatly appreciated ! I will be going overseas for studies in about a
month's time and out of a sudden, this disease is making a "Comeback" in me.
I really need help urgently to be treated locally before leaving . I'm
living in Singapore.

Does such disease makes a "comeback" after some time ? Isn't the carnitine
suppose to aid in the absorption of fats in my muscles ??  Thanks a million
!!

I've just seen my doctor who has been in charge of my case for the past 4
years. All he said of the cramps was that because I had lipid storage
myopathy. and adsorption of fats into my muscles was not functioning well.
and that's it. He asked me to increase my daily dosage now.


Past Daily dosage each time: 15ml carnitone with 100mg of  vitamin B2 tablet
* Used to take twice dosage each day (X2)

Present Daily dosage each time: 15ml carnitine with 100mg of vitamin B2
tablet
*Presently taking thrice dosage each day (X3)

Regards,
angeline
angeline_yam at yahoo.com   OR   yamsc at singnet.com.sg









More information about the Neur-sci mailing list