Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Thanks for the kind words, . Unfortunately, I've not managed anyone with chronic GVHD so my knowledge is limited to what I remember from med school (and from what I just quickly re-reviewed ). It sounds like chronic GVHD has features of autoimmunity such as autoantibodies, but the database I consulted doesn't consider it an autoimmune disorder. As I talked about in the other post, the presence of autoantibiodies could be an effect of the disorder -- for example, a reeved up immune system starts making autoantibodies that don't do anything. (In an autoimmune disorder, the autoantibodies cause an immune-type reaction that defines the disorder.) Chronic GVHD also has features of several connective tissue diseases such like lupus and scleroderma, and several others, so it fits in well with what we're talking about. The skin manifestation of chronic GVHD sounds markedly different than rosacea, so it's possible that a quick look from a specialist is all that's needed to distinguish the two disorders. We know that rosacea is associated with immune-mediated disorders, so it wouldn't be surprising that it is also associated with chronic GVHD, even though that condition has its own skin manifestations. Certainly a second opinion sounds reasonable. You might consider another academic medical center, one closer to you than Hopkins. Good luck! Marjorie Marjorie Lazoff, MD > Marjorie said: " I am intrigued by the whisper of immune-mediated > pathology in > rosacea. I'm going to educate myself on this more, and will share > with the group anything interesting I uncover. " > > Marjorie. > Thanks for taking the time to explain this to the list. I find it > all very confusing but you have the ability to put in terms that I > can understand (almost) . I still feel that my problem is caused > by my chronic, mild Graft Versus Host Disease although my > dermotologist denies it. However, he made that decision by visual > examination only. It seems to me that GVHD 'IS' an autoimmune > disorder. Would like to know your opinion. I also have fybromialgia > as well as some permanent hair loss which have been diagnosed > as " autoimmune " . GVHD is so rare that most docs are not familiar > with it. Unfortunately a trip to 's Hopkins for a true diagnosis > is out of the question. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 Hi Ann-Marie I couldn't find anything in the conference manual about autoimmune diseases and mito. I believe it was either Dr. Wallace or Dr. Haas that said it. Hopefully bug got more info on it. It might be something to post on " ask the mito doc " . Sorry I couldn't find anything in print. laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Dr. Haas was sitting next to me at lunch Sat. and overheard me tell someone that I have Lupus. When the person responded " isn't that unusual ? " Dr. Haas said " not really. " That, unfortunately, is the extent of our discussion about autoimmune disease. I was bouncing back and forth between the clinical and family sessions, so maybe I missed more pertinent info. Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Dr. Haas was sitting next to me at lunch Sat. and overheard me tell someone that I have Lupus. When the person responded " isn't that unusual ? " Dr. Haas said " not really. " That, unfortunately, is the extent of our discussion about autoimmune disease. I was bouncing back and forth between the clinical and family sessions, so maybe I missed more pertinent info. Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 This was NOT specifically discussed at the scientific portion of the conference. But, it was discussed, in passing, by both Dr. Whiteman and Dr. Wallace. Both agreed/stated that autoimmune dysfunction can be a component of mitochondrial disease. They basically indicated that it is no different that involvement of any other " organ system " , ie endocrine, skin, etc. In that context, the recommendation was that as the organ system malfunctions become apparent on must treat the signs/symptoms appropriately giving careful consideration to the options, selecting the on ethat will be least liekly to cause further mitochondrial malfunction. I had a very informative discussion with Dr. Wallace as he is considered to be the " ANT Defect specialist and my girls have an identified defect in ANT along with Complex I, III, and IV (very atypical) with some degree of dysfunction in almost every organ system. Bristow lanebristow@...> wrote: I have to wonder if there isn't an autoimmune factor with mito. I have a positive ANA and have had for several years and have hashimoto's and vitiligo- both of which are autoimmune but not sure if that explains the positive ANA. All of my other lupus workup came back negative. My ANA is 1:640 speckled. I would love to see if there was research about the chance of it being autoimmune. venomvw umhkyfan@...> wrote: Dr. Haas was sitting next to me at lunch Sat. and overheard me tell someone that I have Lupus. When the person responded " isn't that unusual ? " Dr. Haas said " not really. " That, unfortunately, is the extent of our discussion about autoimmune disease. I was bouncing back and forth between the clinical and family sessions, so maybe I missed more pertinent info. Bug Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 This was NOT specifically discussed at the scientific portion of the conference. But, it was discussed, in passing, by both Dr. Whiteman and Dr. Wallace. Both agreed/stated that autoimmune dysfunction can be a component of mitochondrial disease. They basically indicated that it is no different that involvement of any other " organ system " , ie endocrine, skin, etc. In that context, the recommendation was that as the organ system malfunctions become apparent on must treat the signs/symptoms appropriately giving careful consideration to the options, selecting the on ethat will be least liekly to cause further mitochondrial malfunction. I had a very informative discussion with Dr. Wallace as he is considered to be the " ANT Defect specialist and my girls have an identified defect in ANT along with Complex I, III, and IV (very atypical) with some degree of dysfunction in almost every organ system. Bristow lanebristow@...> wrote: I have to wonder if there isn't an autoimmune factor with mito. I have a positive ANA and have had for several years and have hashimoto's and vitiligo- both of which are autoimmune but not sure if that explains the positive ANA. All of my other lupus workup came back negative. My ANA is 1:640 speckled. I would love to see if there was research about the chance of it being autoimmune. venomvw umhkyfan@...> wrote: Dr. Haas was sitting next to me at lunch Sat. and overheard me tell someone that I have Lupus. When the person responded " isn't that unusual ? " Dr. Haas said " not really. " That, unfortunately, is the extent of our discussion about autoimmune disease. I was bouncing back and forth between the clinical and family sessions, so maybe I missed more pertinent info. Bug Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Sorry, what is ANT? Thanks, RH > Dr. Haas was sitting next to me at lunch Sat. and overheard me tell > someone that I have Lupus. When the person responded " isn't that > unusual ? " Dr. Haas said " not really. " That, unfortunately, is the > extent of our discussion about autoimmune disease. I was bouncing back > and forth between the clinical and family sessions, so maybe I missed > more pertinent info. > > Bug > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I hope someone is able to pass on about the autoimmune..Since I have Lupus also I am very interested... I am glad you all seemed to enjoy the conference and learned alot..It sounds like it was much better this year..now maybe Ill save up for next year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 I thought it was much better - hotel, food, speakers, topics. Next year is in Atlanta - same week as this years. laurie > I hope someone is able to pass on about the autoimmune..Since I have Lupus > also I am very interested... > I am glad you all seemed to enjoy the conference and learned alot..It sounds > like it was much better this year..now maybe Ill save up for next year > > > > Quote Link to comment Share on other sites More sharing options...
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