Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone!
I have been back and forth, up and down, round and round with a few doctors as I navigate my health issues.
One doctor diagnosed me with lupus (positive Smith antibody, but negative ANA), dermatomyositis (positive Mi2 antibody), and anticardiolipin antibody. He put me on prednisone (with a ton of weight gain) and Plaquenil. Only my rashes got better, but my various aches/pains, extreme fatigue, GI problems, minimal proteinuria, etc. responded. He finally threw his hands up ... and suggested YOGA!!!!
I then went to a major teaching university clinic to be re-evaluated. EVERYTHING ... and I mean everything ... came back normal. Negative Smith antibody, negative Mi2 antibody, negative anticardiolipin antibodies, negative urinalysis. I couldn't even get the doctor to call me back to discuss/explain everything or allow me to ask some questions about how this could be so.
In the meantime, I was diagnosed with pernicious anemia (positive anti-intrinsic factor antibody and extremely low B12 levels). My primary care doctor is managing this autoimmune condition.
I have been sitting here all alone after that visit to the major teaching clinic. I weaned myself off the prednisone and stopped my Plaquenil. I was so confused ... and didn't know what to believe anymore. My friends and family think I'm crazy. I'm still out there ... hurting, feeling unwell, and very abandoned.
I finally called my primary care and have an appointment with her next week. She is very compassionate and caring, but is honest that she doesn't know what do to with me. She says I'm a complex case (... or am I? Maybe all the previous positive labs were a false positive, even though they were run by different specialty laboratories. My PCP is confused too.)
I want to ask her to refer me to a rheumatologist. I'll go one more time, just once ... but I want it to be someone who will help me get to the bottom of this.
Does anyone have a doctor they would recommend .... someone who thinks out of the box, someone caring and determined to find out what might be going on with me?
I really need some recommendations because I don't want to just pull out a phone book or google 'lupus doctors'. Can you all please let me know your thoughts on the current doctor who is managing your lupus?
To be honest, I would travel almost anywhere to find someone who is caring or willing to dig a bit deeper than other physicians might. I live in the northeast (only about 2 hours from Boston and about 5 hours by train from New York). I do have family in North Carolina ... so I would be amenable to seeing someone in that general area. Again, I would go almost anywhere at this point ....
Thank you all and I hope you're all having a relatively pain-free day!
I have been back and forth, up and down, round and round with a few doctors as I navigate my health issues.
One doctor diagnosed me with lupus (positive Smith antibody, but negative ANA), dermatomyositis (positive Mi2 antibody), and anticardiolipin antibody. He put me on prednisone (with a ton of weight gain) and Plaquenil. Only my rashes got better, but my various aches/pains, extreme fatigue, GI problems, minimal proteinuria, etc. responded. He finally threw his hands up ... and suggested YOGA!!!!
I then went to a major teaching university clinic to be re-evaluated. EVERYTHING ... and I mean everything ... came back normal. Negative Smith antibody, negative Mi2 antibody, negative anticardiolipin antibodies, negative urinalysis. I couldn't even get the doctor to call me back to discuss/explain everything or allow me to ask some questions about how this could be so.
In the meantime, I was diagnosed with pernicious anemia (positive anti-intrinsic factor antibody and extremely low B12 levels). My primary care doctor is managing this autoimmune condition.
I have been sitting here all alone after that visit to the major teaching clinic. I weaned myself off the prednisone and stopped my Plaquenil. I was so confused ... and didn't know what to believe anymore. My friends and family think I'm crazy. I'm still out there ... hurting, feeling unwell, and very abandoned.
I finally called my primary care and have an appointment with her next week. She is very compassionate and caring, but is honest that she doesn't know what do to with me. She says I'm a complex case (... or am I? Maybe all the previous positive labs were a false positive, even though they were run by different specialty laboratories. My PCP is confused too.)
I want to ask her to refer me to a rheumatologist. I'll go one more time, just once ... but I want it to be someone who will help me get to the bottom of this.
Does anyone have a doctor they would recommend .... someone who thinks out of the box, someone caring and determined to find out what might be going on with me?
I really need some recommendations because I don't want to just pull out a phone book or google 'lupus doctors'. Can you all please let me know your thoughts on the current doctor who is managing your lupus?
To be honest, I would travel almost anywhere to find someone who is caring or willing to dig a bit deeper than other physicians might. I live in the northeast (only about 2 hours from Boston and about 5 hours by train from New York). I do have family in North Carolina ... so I would be amenable to seeing someone in that general area. Again, I would go almost anywhere at this point ....
Thank you all and I hope you're all having a relatively pain-free day!
Here is just one link to integrative doctors near Boston, but you could search other sites for a listing of integrative physicians.
http://www.naturalhealthadvisory.com/person_type/doctor/?professional_degree=md&practice_specialty=integrative-medicine&additional_specialty=&person_geographic_area=greater-boston&person_search_last_name=&person_sex=&person_state=&Click+here+to+search=SEARCH+%C2%BB
My one suggestion is to collect all your positive tests, and reports that suggest lupus and bring them with you. But sometimes it just takes time for your disease to go on before you can get diagnosed.
I'm not sure I would have gone off the plaquenil though. It takes a long time to work, and it's subtle, but it may prevent more problems, and even let you feel pretty decent.