I have SLE and have had PN for many years, which has now turned into compressions, tarsal, unlar, radial, carpal, tn, on and gn. I also have cervical spine issues. WILL a nerve biopsy tell me what exactly the damage is to my nerves so I know if spine surgery would be helpful? I've had 3 opinions spine surgery is necessary. THanks, JulieView Thread
I understand your response, and you are right, we are having a problem communicating. I do not think we can past this. I am going to see another rheumatologist in about a week and am looking forward to learning more about decisions for my care. I know a different opinion doesn't necessarily mean the right opinion, but I have inquired about Benlysta and I do meet the requirements. I'm not going back to that rheumatologist, I'm very upset and hurt. I see patients all around me getting tested throroughly for complications and I have never once been referred for any test to check my kidneys, or liver, etc. I've never been asked how I feel. I don't think this is right. I'm done with this doctor and starting to think that he did not give me decent care.View Thread
My rheumie puts me on high doses of prednisone for flares for SLE about 5 times a year. I have constant discoid ulceric lesions and vascular lesions, other rashes, hives, vasculitis (skin), low grade fevers, mouth and nose sores (esp nose), anemia, fatigue, cranial neuropathies (TN, GN, vagus nerve issues), peripheral neuropathy.
My rheumie said (and I quote) he would be the laughing stock of his hospital if he was to treat me with Benlysta, Methotrexate, Imuran, etc.
My ANA's are highly positive and have been since dx in 2010. (Although I've had it much longer (miscarriages, etc) My sed rate and complements though are normal.
I understand the ACR considers cranial neuropathies a symptom of PNSLE. But none of my doctors recognize it as such and my neurologist has me on tegretol. My rheumatologist does not think it warrants prednisone or any other aggressive treatment for my lupus.
Thanks, Julie (a SLE patient who does not want CNS lupus)View Thread