jknjl Posted January 16, 2006 Report Share Posted January 16, 2006 I am a new member to this forum and would first like to say how informative and interesting I have found the postings to be. I have learned more here in the last two days than I have since my diagnosis in 2002. However, I do have a great physician, and I do not mean to diminish the excellent care he has given me by that comment. That having been said I was curious as to whether anyone else here might have an autoimmune disorder along with their Dysautonomia. I was wondering if it was somehow related. Thank you. Quote Link to comment Share on other sites More sharing options...
michiganjan Posted January 17, 2006 Report Share Posted January 17, 2006 Dr. Grubb, a dysautonomia expert at Medical University of Ohio, said on my initial visit with him severyal years ago that he believed my POTS to be secondary to an autoimmune disease. I believe he said this based on my reporting of my symptoms. About 25 years ago I suffered attacks of a mysterious "virus?" that caused my wrist bones and knuckles to swell, accompanied by a low-grade fever, extreme fatigue, and the POTS. It is possible I had the POTS before that or even all my life because even as a child I was always looking for a place to sit down. However, the rheumatic type symptoms were sudden onset as an adult early 30s and they came and went over the next several years until they seemed to stop. It has been about 15 years since I have had a flare.My primary care doctor at the time told me he was sure I have rheumatoid arthritis, although the blood tests did not show anything, and the x-rays of my wrists taken by a rheumatologist did not show arthritic changes.Since then, sometimes my ANA will be abnormal and sometimes it will be normal. Nothing else has shown up. I sometimes think I have some kind of autoimmune disease that is just not discovered yet.Michigan Jan Quote Link to comment Share on other sites More sharing options...
wareagle Posted January 17, 2006 Report Share Posted January 17, 2006 If I'm not mistaken.. I THINK on the DINET website under list of possible causes autoimmune disorders are listed. For instance one might develope POTS following the development of Lupus or another autoimmune problem.I'm not sure if there's research on the link between POTS and autoimmune issues..but I believe there definatley is a strong connection at leaste for some of us. My doc. believes I may have some type of autoimmune response going on and that's what's causing the severity of my POTS and I tend to agree with him. It's apparent that my immune system is in "overdrive" and has been for the past 2.5 years...I haven't gotten sick...(knock on wood)..since developing POTS back in '03...and the most obvious "cause" of my dysautonomia was a virus..probably EBV. With that said..I've never had any abnormal levels when tested for autoimmune issues...but I do think there is something else going on. Welcome to the forum!! Quote Link to comment Share on other sites More sharing options...
Guest CyberPixie Posted January 17, 2006 Report Share Posted January 17, 2006 I have very high thyroid antibodies which is autoimmune. Also, I've been on steroids which have helped my gastritis enourmously so highly suspect it's autoimmune gastritis. I think there may be other autoimmune problems going on too, I barely make any esotrogen which could be down to that too. Quote Link to comment Share on other sites More sharing options...
ariella Posted January 17, 2006 Report Share Posted January 17, 2006 I've had some unidentified autoimmune disease going on from about 2 years prior to onset of POTS . For now the manifestation is myasthenia gravis, but autoimmune diseases tend to come in clusters, and it's possible there is another one lurking in the curtains my neuro thinks it is possible that my POTS and myasthenia are somehow related, but can't know for sure. But they do piggyback together...Ariella Quote Link to comment Share on other sites More sharing options...
Gena Posted January 17, 2006 Report Share Posted January 17, 2006 I have celiac, which an an autoimmune disorder of the small intestine, and basically affects so many other facets of the body as well. As another poster said earlier, if you have one autoimmune disorder, you are more likely to have another one lurking in your body to be discovered.I am sure I have other automimmune problems. My ANA is always high, but doctors cannot pinpoint what's causing it.Also, Dr. Sawyer in Birmingham wrote an ariticle that speculated that dysatuonomia and autoimmune disorders were most likely linked somehow and that maybe dysatuonomia is an extension of some autoimmune disease.Hopefully we will get some definite answers within our lifetime! Gena Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted January 17, 2006 Report Share Posted January 17, 2006 I was hit with NMH at the same time I was suddenly hit with CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), an auto-immune disorder. My symptoms were extreme fatigue (sleeping 20 hours a day and fighting terrible exhaustion), frequent migraines, nausea, problems concentrating, joint pain and bone pain, and about a dozen other symptoms....At the same time, I was diagnosed with NMH because my blood pressure would drop so suddenly when I was upright. My hands and feet instantly turned purple b/c of the blood sinking down into my extremeties.I know that my OI and CFIDS certainly work together- too bad they work AGAINST me!! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 17, 2006 Report Share Posted January 17, 2006 Here's a poll on the topic from over a year ago--FYIhttp://dinet.ipbhost.com/index.php?act=ST&f=1&t=1095Katherine Quote Link to comment Share on other sites More sharing options...
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