gymcoach10
05-03-2007, 01:19 AM
Hello to all! I have been gone for a while- 6-8 weeks! As most of you know, I am dx w/ sle, raynauds, fm I had masses arise on both my ovaries in early March (kind of really scary my grandmother died of ovarian cancer). My dr wanted to wait 6 weeks and retest- if one thing I have learned here, seek a second opinion, which I did three weeks later. I found a wonderful gyn who saw me immediately. She ordered repeat tests, found that the masses had grown and had spread to the fallopian tubes so ordered immediate surgery. I had a total hysterectomy and ovaries removed. She did a search of my abdomen as well- found out no cancer!! Yea!! My question is- have any of you had a situation where this goes from organ to organ...I have had since diagnosis and this started my appendix out, then my gallbladder, and now my girl parts. Each time had non cancerous lesions/masses present. Any thoughts on this?
On another note, my mother has had some form of arthritis for years, overactive bone growth, thyroid disorder (a huge goiter!) and has always refused to be on medication or attend follow up appointments. She had tests done for pain in her abdomen about 6 months ago and they noted lesions on her liver. She, too, had to have a total hysterctomy due to enlarged uterus and such which is pretty normal i guess. She had a spot come up on her face, not like my normal butterfly rash, but different. She has had the spot for several months now. I finally convinced her she needed to make sure it was not cancer and took her to the dermatologist. The spotis on her face and very noticable. The dermatologist did a byopsi and she got the results today. It is lupus. Isn't that crazy. I have always thought she had some type of autoimmune issue especially the more I have had to deal with. The dr told her she had to have the ANA and stuff completed and that she had to go on Plaquenil immediately. He asked if she had ever heard of Lupus, and only then did she mention I had SLE.
My daughter, who I have posted about before, has many of the same symptoms I have, she has been tested, and the results were not what the dr expected, but not high enough to be positive. He recommended we moniter her.
Any new research on genetics links? Obviously, there is something here.
thanks
On another note, my mother has had some form of arthritis for years, overactive bone growth, thyroid disorder (a huge goiter!) and has always refused to be on medication or attend follow up appointments. She had tests done for pain in her abdomen about 6 months ago and they noted lesions on her liver. She, too, had to have a total hysterctomy due to enlarged uterus and such which is pretty normal i guess. She had a spot come up on her face, not like my normal butterfly rash, but different. She has had the spot for several months now. I finally convinced her she needed to make sure it was not cancer and took her to the dermatologist. The spotis on her face and very noticable. The dermatologist did a byopsi and she got the results today. It is lupus. Isn't that crazy. I have always thought she had some type of autoimmune issue especially the more I have had to deal with. The dr told her she had to have the ANA and stuff completed and that she had to go on Plaquenil immediately. He asked if she had ever heard of Lupus, and only then did she mention I had SLE.
My daughter, who I have posted about before, has many of the same symptoms I have, she has been tested, and the results were not what the dr expected, but not high enough to be positive. He recommended we moniter her.
Any new research on genetics links? Obviously, there is something here.
thanks