@jodyradney Wow you sure have been through alot Welcome to connect hopefully others will chime in ,we all try to give our information about we can I have some websites that maybe helpful http://www.WebMd.com,www.nccih.ncib.nih.gov One thing I take for my inflammation is Ginger-Tumeric tea Tumeric is anti inflammatory they have it in capsules but I have a touchy stomach so I drink the tea Amazon or Trader Joes is where you can find it Sorry I can't help anymore.

'Go to NIH,Joyradney! Let all the expersrts look at you and share the information in one place! My sister and I both go to different university hospital s and are glad we do! Have run out if air for now so will sign off

@jodyradney In reading your story, it sounds like inflammation and too much fluid in your tissues are a big part of the problem, and that you are on prescriptions trying to lower the inflammation. Your diet can also contribute a lot to inflammation, and it might be worth an experiment to research how eating a healthy diet with very low sugar intake could help. I don't know if you already do this, but I have made huge changes in my diet to avoid all gluten, lower sugar intake, eat foods that are low on the glycemic index, etc. I have multiple food allergies, and Hashimoto's Thyroiditis (autoimmune). This helped me a lot. I see a environmental allergist (functional medicine doctor) who has helped get my thyroid and hormone levels properly tuned for good health as well as injections for my allergies (they cause inflammation too). When my thyroid hormone levels were too low, I had a bit of fluid retention in my ankles (hardly noticeable) which went away when the levels were right. Getting allergies in check helps lower body inflammation. One suggestion I had from a doctor when I had too much fluid in my ankles was rebounding (jumping on a small trampoline). It's not jumping high, just a little bounce. The lymph fluid that you have in your body bathes all your cells, and it circulates in a separate circulatory system, and actually drains back into your blood circulatory system. It does not have any pumping action to move it except for the contraction of your muscles with exercise. That might help if it is something that is safe for you. A massage therapist can also work on lymphatic drainage that might be blocked. I also suggest looking up side effects of all of your prescriptions in case they could be causing any of those problems. Fluid in your lungs can be caused by heart failure. If no one has checked your heart health, it might be worth looking at. My dad had heart failure and when he had fluid in his lungs, he was so weak he could not get out of bed. I would think they may have looked at that since you were hospitalized, but you might want to get your records and read them to check and to figure out what your doctors were thinking. Bloating after eating can be a gluten issue. I have had to take all gluten out of my diet. Sometimes you figure out these problems in small steps. I would encourage you to try reducing inflammation with diet changes and see if it helps.

Wow seems like we are going through the same thing! For yrs my right side was getting weaker and weaker..and now whole right side is inflamed. I too have gotten tested for almost all autoimmune..have had many MRIs cat scans..exrays..still no clean cut diagnosis..just know what I dont have. Recently though I noticed a lump on the bottom of my neck and my voice is changing and annoying cough. My endo is for some reason not sending my prescript of ultrasounds and blood tests. Also have had 2 plus blood in urine for a year. Still no reason found why. Docs look at me and say eh I dont know what it is and say see me in 6 months. So frustrating. Sending my reports to mayo clinic tomorrow I just have to have full work up already. And I have heard great things about mayo clinic:)

Have your doctor send your blood to Mayo Clinic Rochester to check for the antibodies for POTS and also for Autoimmune Encephalitis. They have blood panels they do for both. That’s what we did with my son. Then find a very good neurologist (teaching hospital?) and join Facebook pages for both those diseases. Lots of info on there and recommendations. Also watch YouTube videos for doctors that know about it. Don’t let anyone tell you that you have a problem like depression or hypochondriac. You know when you are sick. Also, take your mom with you! They tend to be not as rude and condescending when you have someone else in the room. Good luck and let us know how it goes.