cryoglobulinemia

[Guest guest]

i am interested in any information any of you may have about this

autoimmune disease i am asking in this forum because through my research i

have learned that this is many times linked to Hepatitis B or C...here is

my story....i am new to this list....when i was 13 i was diagnosed with

haveing cryoglobulinemia....my symtom at that time was breaking out in

terrible hives whenever i had contact with the cold...i do not believe they

knew much about this at that time since it has been almost 20 years

since....i am now 32....i was given some kind of medication that made me

very sleepy...they told me my cryoglobula's were all gone.....but my cold

reaction has never left....i also have fatigue and joint pain which i

recently learned may be related to this and not just in my head or just old

age and motherhood.....i havent had any treatment for this since i was

probably 14...they said the hives due to cold should go away with time but

they never have....so my question is once you have been found with

cryoglobula's do you always have them unless medicated, i.e. i think they

can be controlled but i believe they recur after treatment is ceased...is

this correct? at that time in my life i dont believe i was ever tested

for any liver disorder; any kind of hepatitis. i was also never told that

this was an autoimmune disease. i think the doctor at the time thought oh

you just bring these levels of cryoglobula down and she will be

fine.....but i haven't been tested in 18 years.......what do ya'll think

does any one have experience with this disease? I would deeply appreciate

any and all replies.