StayAtHomeMom Posted February 5, 2017 Report Share Posted February 5, 2017 So I am wondering how many people have found their cause and what it is. My urine analysis came back normal so it is not hyperPOTS for me. I had an ANA done shortly before I got sick that was negative. I have been on 20mg propranolol for a few days and it is helping my heart rate but not my breathing issue (which is my number 1 issue). So I am hoping maybe someone has the same issues and they found their cause. I have thought about Sjogren's but it doesn't usually have a breathing manifestation that doesn't show up in any lung test. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 5, 2017 Report Share Posted February 5, 2017 Hi Mom, Did you get a copy of the results of the ANA test? I only ask because for years I was told mine was "negative", but when I went to someone who did research in addition to seeing patients, he said it wasn't "negative", but really "inconclusive" initially. It wasn't normal, but it wasn't clearly positive. Evidently, there is some gray area with autoimmune diseases. Eventually, it turned overtly positive, but it took many years. My POTS started at puberty, so that is their best guess for a trigger. My Rheumatologist's theory is that dysautonomia caused the autoimmune disease. None of this can be proven. They have checked your pulmonary pressures and it came back normal, right? I'm sure there are answers out there. I just wanted to make sure you knew to get a copy so you could define 'negative'. You may already have a copy and have a true negative. I hope this helps and I hope you get answers soon. Kim Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 5, 2017 Author Report Share Posted February 5, 2017 I have a copy of my results of my ANA and it seems to show negative. Personally it looks more like a result report than the actual results but it is what my dermatologist gave me. I had a skin biopsy to confirm PMLE and she did an ANA as a precaution. Not sure if it checks for all autoimmunes or just some. I have read ANAs can be unreliable. I am not sure if they checked pulmonary pressures. I know I have had 3 breathing tests and a full PFT. Plus 2 chest xrays and a chest ct with contrast. I have wondered about pulmonary hypotension but not sure how they would test. My pulmonolgist released me last month swearing my lungs were fine. He was the first doctor I had that listened to me and seems to be highly respected in his field in my area. I can only verify my POTS started this past November, but I have been having the breathing issue since July of 2015. I assumed if I got my heart rate under control my breathing issue would subside. It has only been a few days, but I did my poor man's (I have been daily since December) and it was beautifully normal, but my breathing issue was still there. It is kind of frustrating. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 6, 2017 Report Share Posted February 6, 2017 What was you ANA ratio? It should be 1: and then another number. If you don't have that number, you don't have the results, you have a report. With breathing issues, I am concerned about scleroderma. My best friend has it and ended up on oxygen before they got it under control. It is fairly rare and unlikely, but I wanted to mention it. Her case was severe and her ANA was positive, but not all cases present that way. For a dermatologist to run an ANA, it makes me think that was what they were looking for. Can you ask them why they ran the test and what disease they were trying to rule out? If they say scleroderma, I would make an appointment with a Rheumatologist. I hope this helps. Let me know if I can help with anything. I don't know a lot, but I have some experience with some autoimmune. Kim Quote Link to comment Share on other sites More sharing options...
yogini Posted February 6, 2017 Report Share Posted February 6, 2017 What is the nature of the breathing issue you are having? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 7, 2017 Author Report Share Posted February 7, 2017 Yogini: When I am upright, active, or standing it is worse, but it is still there while laying down. I have had it everyday all day since I went for a short run in July 2015. It is kind of a tightness in my chest that makes me feel the need to expand my lungs as much as possible by sighing or yawning every few minutes. Sometimes I can get the deep breath, most of the time I can't. If I fight with it I will end up hyperventilating and end up at the hospital. KiminOrlando: it just said negative. She didn't tell me what specifically she was looking for. Just that some autoimmunes present in the skin and I get a weird sun allergy rash every year in the spring for the last 6 years (except last year). She diagnosed it as polymorphic light eruption. After the skin biopsy and the negative ANA. But this was done in April 2015, about 2 months before I got the breathing issue. Last year I think my skin rash didn't show up because I was avoiding direct sunlight due to some meds my dermatologist had me on. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 7, 2017 Report Share Posted February 7, 2017 I checked with my friend to find out how they check pulmonary pressure and she said they do an echo. They probably already checked for it when they were doing a cardio work up. If your ratio was less than 1:40, they may just put negative on the test. Unfortunately, the people I know who get tested seem to turn up positive, so I don't have anyone to ask on that one. I am short of breath a lot too, but they determined for me it is the tachycardia. The docs had me buy one of those fingertip O2 meters to track what is going on. They aren't that expensive and maybe it would give them something to work with if you could keep a log. I learned that I am oxygenating ok, most of the time, even though I am out of breath. The only exception is when my heart rate drops below 60 (normal is 93-105), then O2 drops to the mid 80s. We are working on that one. It only happens about once a month. Feeling like your chest is tight and you struggle to get a deep enough breath sounds alarming. I have heard other people say that they felt like their body forgot how to breathe, but nothing like that. I hope you find answers. Kim Quote Link to comment Share on other sites More sharing options...
sb4 Posted February 7, 2017 Report Share Posted February 7, 2017 Virus gets into b cells, causes autoimmunity against alpha/beta adrenergic and muscarinic receptors. There currently is only one place to get this test, which im trying to do. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 7, 2017 Report Share Posted February 7, 2017 Interesting. Did your doctor say this symptom is from dysauotnomia? It doesn't sound typical. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 7, 2017 Author Report Share Posted February 7, 2017 KiminOrlando: it feels like sometimes i forget to breath but that is at night and only happens every once in a while. My breathing issue was terrifying at first but after test after test came back normal it is mostly just irritating and frustrating. It is like walking around meditating all the time to make sure my heart rate stays down and my breathing slow. I am currently trying to get my insurance compant to cover the pulse oximeter so i can check my o2 and pulse much easier. My o2 seems to be fine whenever they check though. Yogini: they haven't said it was part of my POTS, i just assumed it was considering it does get better when laying down and i can get my deep breath easier if i am laying and doing minimal activity. If my POTS isn't causing it then i am back to the drawing board because the docs have no idea. Quote Link to comment Share on other sites More sharing options...
angelloz Posted February 7, 2017 Report Share Posted February 7, 2017 Hi , You can get a pulse oximeter fairly cheap on Amazon. It can be comforting to know you are getting more oxygen than it feels like. I have had breathing issues since the start of my autonomic issues that don't always coincide with tachycardia. Sometimes it was like my body didn't breathe automatically and it would take a great deal of effort to breathe. sometimes it was difficult to breathe out as well. It could be rather scary. Also, when I would start to doze off I would jerk awake and need to breathe. Sometimes when standing I would realize I was holding my breath. I know another member who had a great deal of breathing issues. I too had normal lung function tests. Hang in there! Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 7, 2017 Report Share Posted February 7, 2017 I have breathing issues as well with my hyper pots. They're currently checking me for mast cell activation syndrome bevause my protein levels are high. I have had pots for about 10 years now. I think it was made way worse and brought to light when i was bulimic in my teens sadly since that's when my symptoms were the absolute worst. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 7, 2017 Author Report Share Posted February 7, 2017 Kalamazoo: that is the next thing i want them to check since i have allergic reactions but an allergy skin test came up almost totally negative. What is the easiest way to check for MCAD? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 7, 2017 Report Share Posted February 7, 2017 Blood and urine test. Quote Link to comment Share on other sites More sharing options...
MoMo Posted February 7, 2017 Report Share Posted February 7, 2017 I just did the testing for MCAD. Still waiting on results. I also get various breathing problems including the feeling that I cannot get a deep breath. I frequently sigh and yawn. Which is weird because my oxygen levels are frequently fine. I also have asthma and vocal chord dysfunction. I recently saw a speech pathologist who taught me various breathing exercises that have helped a lot. I still have some breathing problems but they are much more manageable now. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 8, 2017 Report Share Posted February 8, 2017 I'm in the same boat, minus the asthma but I never feel like I can breathe in fully it's so irritating. Quote Link to comment Share on other sites More sharing options...
Tiffanyi80 Posted February 8, 2017 Report Share Posted February 8, 2017 With the difficult breathers with POTS; have you been checked for MALS or celiac artery stenosis? It can feel like you just can't take a full breath. Quote Link to comment Share on other sites More sharing options...
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