ramakentesh Posted October 8, 2012 Report Share Posted October 8, 2012 Sorry for the delay in posting. Enjoy:http://edrv.endojournals.org/cgi/content/meeting_abstract/33/03_MeetingAbstracts/OR48-1 Quote Link to comment Share on other sites More sharing options...
issie Posted October 8, 2012 Report Share Posted October 8, 2012 WOW --advancements are occuring. Thanks for posting and welcome back!Issie Quote Link to comment Share on other sites More sharing options...
Guest mattgreen Posted October 8, 2012 Report Share Posted October 8, 2012 Great find. This hasn't appeared on Pubmed and as I am collecting auto-antibodies in which I should like tested, this is very helpful.Also, is there a panel from any of the Center's of Excellence that test for these auto-antibodies and include the testing for AAG (nAChR), etc? Quote Link to comment Share on other sites More sharing options...
corina Posted October 8, 2012 Report Share Posted October 8, 2012 Thanks Rama, very interesting! Quote Link to comment Share on other sites More sharing options...
diamondcut Posted October 9, 2012 Report Share Posted October 9, 2012 I am colllecting autoimmune data to take along next month to my new Immunologist too.With articles like this, when you present it to Immunologists who do not know much about POTs but hopefully they will understand what this means on a autoimmune level.Again when you present this type of data, what would they be able to offer as possible treatment if any and of course depending on blood results. Quote Link to comment Share on other sites More sharing options...
weathermandj Posted October 9, 2012 Report Share Posted October 9, 2012 Cool study; thanks! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 11, 2012 Author Report Share Posted October 11, 2012 Interesting to note the tiny cohort and fairly low titer readings (which is the same as the AAG suggested mechanism). Quote Link to comment Share on other sites More sharing options...
issie Posted October 11, 2012 Report Share Posted October 11, 2012 Interesting to note the tiny cohort and fairly low titer readings (which is the same as the AAG suggested mechanism).Trying to understand your statement. What is AAG mechanism?Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 11, 2012 Author Report Share Posted October 11, 2012 Autoimmune autonomic gangliopathy.Have a look at the titer levels found in most autoimmune diseases and then compare them to the findings in POTS (titer levels in the study above and the AAG). Compelling? Quote Link to comment Share on other sites More sharing options...
issie Posted October 11, 2012 Report Share Posted October 11, 2012 Thanks for the clarification. Will take a look!Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 11, 2012 Report Share Posted October 11, 2012 So I wonder... what happens after a study like this comes out and the other one out of Mayo, which also found auto-antibodies in POTS? Will blood tests be developed? Does anyone know how this works? Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted October 11, 2012 Report Share Posted October 11, 2012 Autoimmune autonomic gangliopathy.Have a look at the titer levels found in most autoimmune diseases and then compare them to the findings in POTS (titer levels in the study above and the AAG). Compelling?I'm not very educated in the autoimmune area. What exactly are you trying to say here? Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted October 12, 2012 Report Share Posted October 12, 2012 My cardiologist talked to Dr Grubb about getting testing for the adrenergic antibodies in April and was told this testing was only available in Brazil, but that was 6 months ago. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted October 12, 2012 Report Share Posted October 12, 2012 Interesting this article came from Oklahoma City. I wasn't aware of a center there that specializes in autonomic dysfunction. Thx for sharing. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted October 12, 2012 Report Share Posted October 12, 2012 I dont understand - what would be possible causes of this autoantibodies? Quote Link to comment Share on other sites More sharing options...
Anoj Posted October 12, 2012 Report Share Posted October 12, 2012 autoimmune disease, i guess. wouldn't surprise me, considering i have another autoimmune disease. stress is a killer. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 13, 2012 Author Report Share Posted October 13, 2012 You will note that in most of the studies looking at autoantibodies in pots the levels of titers are only just minutely over normal, suggesting that if anything its more likely an epiphenonema rather than pathophysiological. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 13, 2012 Report Share Posted October 13, 2012 Rama - what about the Mayo study?http://www.ncbi.nlm.nih.gov/pubmed/23002038 Quote Link to comment Share on other sites More sharing options...
jangle Posted October 13, 2012 Report Share Posted October 13, 2012 You will note that in most of the studies looking at autoantibodies in pots the levels of titers are only just minutely over normal, suggesting that if anything its more likely an epiphenonema rather than pathophysiological.For those with the ACHR POTS, it was noted in a case study that disease activity was correlated with ACHR titer. I do think inflammation is important in POTS in the sense of an overall immune mediated reaction, whether the specific autoantibodies are important or not I don't know as there are perhaps other autoantibodies now being shown associated with POTS. However, given that people's experience on this board with Prednisone or hydrocortisone has been good (minus the side effects) I'm liking the evidence for autoimmune pathophysiology. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted October 15, 2012 Report Share Posted October 15, 2012 Comes down to what is the auto-immune damaging, I vote for endothelium tissue damage.. Quote Link to comment Share on other sites More sharing options...
Zap Posted October 17, 2012 Report Share Posted October 17, 2012 For those with the ACHR POTS, it was noted in a case study that disease activity was correlated with ACHR titer. I do think inflammation is important in POTS in the sense of an overall immune mediated reaction, whether the specific autoantibodies are important or not I don't know as there are perhaps other autoantibodies now being shown associated with POTS. However, given that people's experience on this board with Prednisone or hydrocortisone has been good (minus the side effects) I'm liking the evidence for autoimmune pathophysiology.At least for me, I had a panel of autoantibody testing done (sent off to Mayo). None of these came back positive, but maybe they are all for other known disorders. I do agree that it seems to be some type of inflammation/autoimmune pathophysiology at the root of at least many cases, as in my own experience I had wonderful results from a tiny dose (1 mg, twice a day) of Dexamethasone. Both my migraines and my dysautonomia symptoms were practically non-existent for the entire time I was on it, and even for a little while after. I didn't really have any side-effects at this dosage, that I could tell in the short term. I had Prednisone to attempt to stop migraines previously, which it did - but it made my sweating issues worse. It was a larger dose, too, FWIW.My guess is that we have a few different "targets" at play, depending on the type of POTS involved. The recent article seems to indicate alpha and/or beta receptors as the immune targets. This makes a lot of sense for certain subgroups, and these are novel tests (not part of the Mayo panel). A lack of response, an excess response, or excess amount of triggering substances in serum - all seem like logical reactions to interference with these critical autonomic receptors. Quote Link to comment Share on other sites More sharing options...
Twiggers Posted October 28, 2012 Report Share Posted October 28, 2012 Is it perhaps possible that instead of one specific autoantibody being way too high as in most definable autoimmune diseases, we have many that are moderately too high? This would then account for the wide array of different symptom manifestations in POTS... yes? Some people might have higher levels of one than another or some have no antibodies to certain receptors etc...I know in my case I have Graves antibodies and Hashimotos antibodies all just within range but much higher than normal persons.The next step from here would then try to understand why we have a cluster of autoimmune antibodies too high - and go from there... Some sort of immune dysfunction at the cytokine level? Or is it from our malfunctioning nervous systems? I really don't know. But we need to figure this out. Quote Link to comment Share on other sites More sharing options...
jangle Posted October 28, 2012 Report Share Posted October 28, 2012 I would like to, but the immune system is perhaps nearly as complex as the nervous system. In the mayo clinic study they presented only ideas about what could be going on. The group out of Australia cited a study on ciliary neurotrophic factor and NET dysfunction. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.