Strange but AI stuff certainly can be. When your stomach does swell, are your doctors able to see, via US, whether or not you have some form of ascites? If so, then they maybe able to assess where the "weeping" is originating from - at least from your abdominal region perspective.
I've dealt with pitting edema myself (when my diuretics aren't dialed in) but it generally follows the ascites buildup first. And mine isn't caused by AI, at least not directly anyway, it's chronic liver based, and driven by portal hypertension. My liver will "weep" and you can see the peri-hepatic fluid buildup as things progress. I'm guess your doctors may notice something similar and provide some additional insight into the pathophysiology.
Thanks for the reply.
Actually, I have gone through an US and no ascites detected. My edema feels and looks like a puffy layer of fluid throughout my body from head to foot. You'd easily mistaken it for a layer of fat if you just looked at me superficially or when I'm fully clothed. I can even feel it in my neck when I turn my head or stretch but it's very noticeable in the lower legs, the shins specifically, where it "pits"/indent when pressed with a finger.
This is going to sound weird, but when the edema is at it's worst, my skin and mucous membranes are usually very dried out, almost like I'm dehydrated, although I don't feel thirsty or anything like that.
My docs are complete dumbfounded by it and recommend I go to a teaching hospital like Cleveland Clinic, but I'm not exactly enthused about taking a trip out there. I'm from NY area
Well, at least you know that your major organ don't seem to be a target. AI diseases can often go after your kidneys, liver, etc. I assume your doctors have already pursued the autoimminue antigen studies so there was no direction there. And your serum data shows nothing else amiss - electrolytes are balanced, endrocrine system happy?
I've been to the Cleveland Clinic and they dona great job there, at least in my case. Long trip for you but they can arraign multiple appts with various doctors on the same day for you.
I'm getting another round of blood work next week but I think they've covered quite alot at this point.
I think the CC is the next step. I'm glad to hear your experience was positive. That gives me some hope. After all this time with no dx, I've grown a little leery of doctors
Hi, I have the same problem and it is very frustrating that no one has any answers. I am a female so the added water weight that looks like fat really is upsetting to me. My best clues to why this is happening is as follows: Adrenal fatigue and/or some complication of gluten intolerance. I have an autoimmune condition they say mixed connective tissue disorder but that just means they can't classify what type of autoimmune disease. I have no symptoms except for extreme fatigue and water retention and some slight swelling on my outer ankle bone. I found out I am gluten intolerant so that means damage and inflammation for the last 45 years but I am gluten-free and almost grain free now. I drink a lot and pee a lot so it is almost like my body is somehow intolerant to water or leaking it through my intestines? Diuretics have never worked and I have no signs of kidney disease. Sometimes I can gain 10 lbs in a few days and I can't exactly figure out the trigger. Sometimes my water retention seems related to food but sometimes I just get a very uncomfortable feeling like someone has put a water hose inside me and by the end of the day my clothes are tight and I feel bloated and waterlogged. I am looking into doing some detoxification to be sure I don't have any kind of overgrowth in my intestines and/or toxins that my body is not wanting to release. Hope this helps you and I definitely feel your pain.
The only thing I can think of is some form of angioedema. It can be hereditary, but it doesn't have to be. My immunologist was telling me that he thought I had it, because I got random swelling and sometimes, red scaly rashes with the swelling. It's not widely known about and/or understood, but it can be life threatening. Have you seen an immunologist about any of this yet?
Hi!
Whatever it is, I think I also have it. My weight varies greatly depending on the time of day (I usually wake up with a flat stomach and bloat like a blowfish throughout the day). I was diagnosed recently with primary schlerosing cholangitis and told that I likely have IBD (I have to go to the clinic to get tested further to see what flavor of IBD it is), so I suspect it's autoimmune-related. The good news is I noticed it gets better (and sometimes flat out disappears) with cardio exercise, assuming you're very well hydrated beforehand. I'll work out for about half an hour in the evening, only to go to bed and have to pee like a champion the next day. It definitely gets worse with stress and lack of movement. I hope we find out what it is at some point. Nobody I know has this problem.