I am not quite sure where or If I should post this letter, but here goes.
To the moderators please feel freeto move this if it is not in the correct place.
After another 2 weeks in hospital, the only thing that is helping me is methaprednisone, 1000mg at a time IV and 50my orally. For those of you that may remember I have had 2 rounds or rituxan that have been unsuccessful. In addtion to this endless cylco, pred etc.....over the last year and a half........I have CNS Lupus -I am losing eye sight, cognition, balance, coordination, and now my hearing!!!
All of Doctors agree now the only thing left that might work is a stem cell transplant or bone marrow transplant. I am still feeling numb, I have no more tears left to cry, uh oh here they come. I feel I am now totally on my own know. I cant ask anyone else here for advise because I asume no one knows what will happen, the effects or if it will help me.
All I know is that I have two beautiful boys aged 7 and 5, a wonderful husband who is only just holding up himself and I am determined to be around for them.
the next few weeks and even months are going to be scary so please excuse my posts I expect I will have to VENT some where, hopefully to to some wonderful people on this site.
take one day at a time
Peta:wink2:
To the moderators please feel freeto move this if it is not in the correct place.
After another 2 weeks in hospital, the only thing that is helping me is methaprednisone, 1000mg at a time IV and 50my orally. For those of you that may remember I have had 2 rounds or rituxan that have been unsuccessful. In addtion to this endless cylco, pred etc.....over the last year and a half........I have CNS Lupus -I am losing eye sight, cognition, balance, coordination, and now my hearing!!!
All of Doctors agree now the only thing left that might work is a stem cell transplant or bone marrow transplant. I am still feeling numb, I have no more tears left to cry, uh oh here they come. I feel I am now totally on my own know. I cant ask anyone else here for advise because I asume no one knows what will happen, the effects or if it will help me.
All I know is that I have two beautiful boys aged 7 and 5, a wonderful husband who is only just holding up himself and I am determined to be around for them.
the next few weeks and even months are going to be scary so please excuse my posts I expect I will have to VENT some where, hopefully to to some wonderful people on this site.
take one day at a time
Peta:wink2: