Neomorph Posted November 30, 2023 Report Share Posted November 30, 2023 I'm wondering if anyone here has dysautonomia as a result of an autoimmune condition, such as Lupus. If so, what was your journey like, and would you feel comfortable sharing some of your symptoms? I think my POTS may be due to an underlying autoimmune or genetic condition. I have a family history of Lupus in particular. Lately I have had horrible dry eyes and dry mouth and my doctor has referred me to an eye specialist to see if I maybe have Sjogren's (which as I understand it, may or may not be associated with Lupus). I have had dry eye off-and-on for a few years but now with the cold, dry weather it is bothering me constantly. I guess I'm wondering how exactly did you find out you have Lupus, or another autoimmune condition, and what tests they did. From what I've read, it can be hard to actually diagnose these and a diagnosis comes from ruling other things out - or getting an ANA blood test. Can someone have like "beginning" stages of Lupus and not test positive for it initially? My organ function/labs are all normal, so my doctor thinks I'm "fine". If you can point me to any medical literature that would be much appreciated too Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 30, 2023 Report Share Posted November 30, 2023 @Neomorph there are specific blood tests for autoimmune diseases. Sjorgens gets tested by blood tests as well as testing how much tears you produce. Lupus is a blood test - there are antibodies they can check. If you suspect any autoimmune diseases you should see a rheumatologist - they know what blood tests to look at in addition to what a PCP would look at ( not just ESR, ANA etc.). Quote Link to comment Share on other sites More sharing options...
Neomorph Posted November 30, 2023 Author Report Share Posted November 30, 2023 Thank you! I didn't realize Sjogren's shows in a blood test. I'm trying to see a rheumatologist, but they denied my referral last time due to "lack of evidence" of me having a rheumatologic condition. My symptoms aren't enough. That is why I'm see the eye doctor now, to gather more "evidence". Sigh xD Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted December 1, 2023 Report Share Posted December 1, 2023 I think half the people with Sjogren's (including me) don't show up in labs for years after symptoms begin (if ever). At this point, your doctor is clown if he doesn't understand that. Current theories suggest POTS/Dysautonomia may be autoimmune in nature too. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 5, 2023 Report Share Posted December 5, 2023 This is a good lecture about Sjogren’s and dysautonomia. I believe I read/heard recently that a large percentage of Sjogren’s patients present initially with autonomic symptoms. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 5, 2023 Report Share Posted December 5, 2023 @Neomorph, I’m not an expert in auto-immune matters, but I believe that the more enlightened specialists are weighing symptoms and patient/family history more these days, rather than relying on antibody tests alone. You may want to look at a local Facebook support group for recommendations for good rheumatologists in your area if you are able to choose who you see. (NB I don’t have lupus or Sjogren’s, but I suspect my mother had Sjogren’s. I have OCHOS caused by an unknown auto-immune or auto-inflammatory disorder.) Quote Link to comment Share on other sites More sharing options...
MattyT Posted December 5, 2023 Report Share Posted December 5, 2023 On 11/29/2023 at 8:29 PM, Pistol said: you should see a rheumatologist they know what blood tests to look at in addition to what a PCP would look at ( not just ESR, ANA etc.). Hi Neomorph, Based on what you wrote, I agree with what Piston said. You need to see a rheumatologist. Don't get discouraged. Ask your primary provider to refer you to a rheumatologist; be direct, persistent and polite. My own personal experience with a rheumatologist made a huge difference in my diagnosis; of all my providers, he is a superhero. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 5, 2023 Report Share Posted December 5, 2023 On 11/29/2023 at 7:43 PM, Neomorph said: Thank you! I didn't realize Sjogren's shows in a blood test. I'm trying to see a rheumatologist, but they denied my referral last time due to "lack of evidence" of me having a rheumatologic condition. My symptoms aren't enough. That is why I'm see the eye doctor now, to gather more "evidence". Sigh xD Keep at collecting symptoms/data. I have had to do this a number of times to prove there was/is more going on than meets the eye. Quote Link to comment Share on other sites More sharing options...
Neomorph Posted December 6, 2023 Author Report Share Posted December 6, 2023 @Sarah Tee @MTRJ75 @MattyT @MikeO Thank you all for your input! I will keep doing what I'm doing, then. I have an appointment this week with a new PCP to see if she will help me with referrals and come up with more of a game plan. Fingers crossed she takes me a little more seriously! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 6, 2023 Report Share Posted December 6, 2023 By the way, I forgot to say how I discovered I had an auto-immune condition. Last year, I got prescribed steroids (prednisolone tablets) for something else, and my orthostatic intolerance symptoms went away completely. I only took the steroids for five days, but felt somewhat better for three months afterwards, gradually returning to baseline. This happened twice. As I understand it, the only explanation for the post-steroid partial remission is that my immune system was dampened down and then gradually rebounded. I also happened to get saline and then albumin infusions to treat possible low blood volume. The saline infusions did nothing, which, along with the fact that other volume expansion measures didn’t work, shows that I don’t have low blood volume. But then the albumin infusions improved my symptoms, although only for a short time. Could not work out why for ages, then happened to find out that albumin has immune-modulating properties. So I had two “backwards” clues. Then some other stuff happened … not auto-immune related … and it turned out I had OCHOS. Then the professor who discovered OCHOS said in a lecture that he suspects OCHOS is auto-immune. So all a bit by chance really. I don’t have any typical rheumatology symptoms such as aching/inflamed joints or rashes or fevers. Only just got to see rheumatologist last week. He is trying me on Plaquenil next month pending blood tests. A long story … @Neomorph, I do hope you have some success with your new PCP. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted December 21, 2023 Report Share Posted December 21, 2023 My medical odyssey started with a diagnosis of severe seropositive Rheumatoid Arthritis 14 years ago. Not long after that I began to experience systematic symptoms which confused my docs. To be fair, the biologic meds have such a huge array of symptoms that it can be easy to blame much on them. I believe that they were masking the Dysautonomia/POTS. The real trick is which came first! From what I’ve read there are still two schools of thought here. 1. The autoimmune condition damages the autonomic nervous system leading to Dysautonomia/POTS. 2. The autonomic nervous system controls the immune system, so dysautonomia causes dysfunction and autoimmunity and hence RA. I believe that a Nobel prize is available for a proven source! Personally I just want it all to go away and to get my life back! Please Santa! 🎅🏼 Quote Link to comment Share on other sites More sharing options...
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