fibrolipomatosis - Rare Disorders Message Board

victoria68 · 05-28-2001, 12:49 PM

Im betting nobody has ever heard of this. Its an inflamation of the median nerve of both hands and Im in severe pain constantly. Along with that I have had two carpal tunnel release surgeries and now they test me and find severe carpal tunnel again. The carpal tunnel is not really worrying me much its the fibrolipomatosis because every doctor I have been to has never heard of it! The only doctor that has is the one that diagnosed me with it and for some reason I cant seem to rest about this. Is this what I have or is it a guess?
Fibrolipomatosis is listed as a RARE disease. Doctor says he sees maybe one case every couple of years.

hoekstra · 07-11-2001, 03:08 AM

welcome in the club ! my disease is also very seldom ! i cannot find any help on this board ! i would suggest you to search with yahoo for neurofibromatosis ! it must be something realted to my disease. my disease angiolipomas has also got something to do with fibromas. but in your case the fibromas are near the nerves. god bless you.

hoekstra · 07-11-2001, 03:11 AM

sorry i mean fibrolipomatosis. i mixed it up with neurofibromatosis. another disease. lipomas are little benigne fatty tumors which appear usually under the skin. most on the trunk. your disease is quite similar to mine, but we both have the problem,that nearly nobody knows anything about it.