Autoimmune? Undiagnosed and don’t know where to go next

I have been reading many of the posts and feel able today to post my story. Before July of 2017, I was very active even doing Zumba twice a week and caring for elderly mom. I have an an undiagnosed auto immune disease which began July 2017. Symptoms are so plentiful and diverse that I have had many doctors tell me I am a mystery. Not something any of us want to hear. I have been in the hospital 5 different times including the Mayo Clinic Minnesota since last year - all for different problems. I spent 12 days at Mayo paying out of pocket with no diagnosis.This also does not include ER visits. No one can diagnose my illness.
Almost all my symptoms are “quiet “ at this time but some of them were in no particular order of occurrence:

Chest pain soreness along the bra line
Soreness in rib area/lung area (still current)
Difficulty breathing (this came from fluid in both lungs)
SVT’s
Extreme fatigue
Pain in calves/thighs
Have Graves’ disease since 18 with just maintenance (after August disease onset T3 T4 not normal)
Extreme inflammation through out entire body causing 2 times of draining fluid from both lungs
Fluid around my heart which was drained
Fevers
Total kidney failure (dialysis 4 months)
Swelling in lower stomach below belly button after eating
Interitis which required admission to hospital
Biopsy of kidneys revealed Minimal Change Disease (nephrologist said failure would not be caused by this)

I have been tested for everything- lupus (multiple times),RA, cancer, tumors, multiple MRI, PT, sonograms, xrays (I’m surprised I don’t glow in the dark). I have 2 three ring binders with hospital tests, information and discs of MRI’s, etc. Rheumatologist tested me for Mediterranean Fever but it was inconclusive.
I have been on plaquinil, prednisone all the way from 60 mg daily now currently taking 5 mg. Took as much as 1,000 mg twice intravenous during kidney episode. Prednisone is a savior and the devil. Took metropolol for my heart which has since cleared up. Colchicine which I am currently taking for the inflammation “seems” to be helping. Inflammation markers which I ask to be checked monthly are still elevated. Inflammation goes up and I get sick. I am also taking CBD oil. I have had anxiety my whole life and extreme stress in my recent life and the oil has been a godsend. My husband says I act like a normal person now. I take that as a compliment because I do feel much calmer.

I’m still trying to get my thyroid in line and get my stamina and strength back. We are considering the NIH for help in diagnosing this illness I have.
I’m sure I’m leaving something out. It has been a long road with no end in sight. I’m trying to listen to my body and take it easy.

@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.

Thank you—I’ll try!,

'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

Do you take blood pressure medication. I have all these symptoms from my blood pressure medication.

Hi, I'm sorry you are suffering, I hope you get a diagnosis soon. For now, get off any processed food/liquid items, dyes, GMO food, any items that have parabens, dye, fragrance, hygrogenated oil. Only drink filtered water, natural fresh juices. Cut back on animal products including dairy. If you do eat animal products at least find hormone free, antibiotic free. I saw an allergist who can't diagnosed me but gave me all this same list. It helps cut back on the conditions you list. Honestly, it's hard to do because we are surrounded by all these toxins. Most of us have autoimmune issues I think because of chronic inflammation we unknowingly inflict on ourselves on a daily basis with shampoo, lotion, junk food etc. Good luck to both of us. Hope you find guidance.
KG: Karma Girl

@beanie300 Wow My sympathy to you for all you,ve gone through. Have you ever gone to to a Mayo Clinic ?They are great at diagnosing If one isn't close to you a university hospital ?A white blood count fights infection since you say yours is high I would suspect an infection of somekind I hope you keep posting ,this is my suggestion as a nurse, till others chime in.Here is a good website might be of interest https://rare diseases.info.nih.gov

@beanie300 To me your symptoms suggest a possible problem with gluten in foods that come from grains. Gluten is a protein on wheat and similar grains that causes an autoimmune reaction with inflammation to the gut. The pain you mention on your left side might be the descending colon on it's last segment to the exit. A gluten problem does cause a skin rash, bloating, headaches, brain fog, joint pain, and tingling, mouth sores. Almost everything you mentioned can be caused by a gluten problem. For me, I get excess phlegm in my lungs and I have asthma which can cause pain in breathing if it gets bad if I eat gluten. Wheat is completely different now than it was 30 years ago, and the incidence of intolerance has increased. It used to be rare that someone had an issue, but that has increased a lot in the general population. This is easy for you to test yourself if you stop eating anything with gluten as a test. Just eat plain meat and vegetables, avoid seasonings (they can contain gluten) and see if you feel better. No grains except rice, corn or oats (if labeled as gluten free). Oats do not contain gluten, but there may have been wheat growing in the field previously and seeded some new plants that got mixed in with the harvest and processed. It takes very little of it to make a person react. You should know within a couple of days if gluten was a problem. There are also blood tests if you see a specialist in this area. Here is some information. Gluten can be in anything and you need to learn what foods are safe. This also causes additional food allergies because of the damage to the gut and inflammation (which happened to me), but people recover well and must avoid gluten the rest of their lives. https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/ and from Mayo's website https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

@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.

Hello, I have a lot of problems myself. Luckily I have just chronic pain, but while I am searching for my answers I discovered I have problems with digesting of some foods. And that helped me with nausea, dizziness,... Try gastroenterologist. I can not say if it will help. But my helped a lot. He helped me to search for celiac desease and another allergies. And my genetics doctor was great too, I do not know how it is in your country but try discussion with one. My found some aminoacid missing in my blood, that was a big relief for my mental problems and fatigue. Maybe someone else can do those tests too, I have never asked. Good luck, get well soon and never give up!