Autoimmune diagnosing problem

I can only tell you what I would try to do in a similar situation First, if you can afford it, spend the money to have Sequencing.com or Dante or one of the other labs do a Full , Whole Genome Sequencing. It is a dirty shame that such a first step for your needs costs so darn much. But I like Sequencing.com because for a few hundred $ you can get several potential answers. Then run through at least some of the tests such as autoimmune or pathogenic or others to see what S.C has come up with. I suspect, just from the sound of things, some sort of Myeloma, especially Amyloidosis. Also look carefully at blood cancer, liver and/or kidney issues. And, talk to a genetic counselor and experienced diagnostician for added help. With this much I would bet you will have at least 20 solid clues. And don't rule anything out. I laughed when S.C suggested Sickle Cell, known as a Black person's disease. Then I remembered that 5 or six generations back, my ancestors thought they owned Black slaves, and did take into the family a few orphans left over from the Civil War struggles. And previously, we were world travelers, including economic jaunts into Japanese, Iceland, Vikings, Portugal, etc., picking up small lots of genetics from every continent.

Is sequencing considered genetic testing?

Yes, @dianecostella Because genes mutate to different forms, sequencing involves tracking these mutations There are other names, but the end product is just a matter of where the train is at the moment. That act of testing and locating the train is the sequencing, karl

@dogmamat Go to Mayo. Great institution. No one could help me in the state of Washington with trigeminal neuralgia. Mayo in Rochester did.

Yes, I am gluten/wheat free and dairy free. Long story short, I was diagnosed awhile back with acid reflux. It kept getting worse-clearing throat, coughing, heartburn. I tried medication and I still have some medication for it. Anyway, I saw an Internal Medicine Dr. in Iowa who was excellent, alternative type Dr. He was recommended to me by my hair stylist. He did extensive blood work on me and stool testing. I got a huge report back from that testing. I was diagnosed with SIBO-small Intestinal bacterial overgrowth. He prescribed me some medicine for that, and I lost 10 lbs. in one week! I felt so much better. He said I have a wheat/gluten and whey intolerance. He wanted me to go gluten free and avoid dairy/cheese. I was devastated as I love pasta and bread. I did what he said to do, so I started with going gluten free. It was challenging, fixing different recipes, eating out-which is hard, as most restaurants have lots of wheat and gluten and reading the ingredients in boxed type foods or canned foods and finding out if the restaurant knows if there is wheat/gluten and dairy in their menu items. It is more expensive to eat gluten free and dairy free. However, I feel so much better, as a result. My body was rejecting the wheat-that is why I was throwing up after eating at Red Lobster-and having their delicious cheddar bay biscuits. I listened to my body and changed the way I eat. I wish Dr.'s here in America would be trained more from medical schools on nutrition/foods/food intolerances/food allergies. From what I have heard is Dr.'s get one class on nutrition and that is it. Maybe they get more training now, I wish they would. I believe food is huge and it has a huge effect on our body and our minds. There is the allergy type testing-traditional at the allergy Dr's office, and I have had many of those- I get the same results each time- berries and citrus----- I can't have a huge bowl or whole lot of berries in one sitting or a huge glass of orange juice or grapefruit juice. Few of them is fine. There are 2 types of food testing-allergy Dr or "prick" kind on your arm or back. Then, the second type is blood testing/lab testing, and I got different results from the blood work- now my latest testing says I have intolerance to eggs, wheat/gluten and dairy. You need both types of testing to get an "accurate" picture of what you are allergic to or have an intolerance/sensitivity to as far as foods go. I feel so much better than I did back in 2015, when I was having lots of tummy aches, diarrhea, throwing up and acid reflux. After the Internal Medicine Dr. visit, I scheduled a visit with the Gastrointestinal Dr. Got an upper endoscopy and I was concerned that I might have Celiac. The Dr. said he didn't see anything going on. Went back for another visit and I was still having issues, and he said we can do an upper endoscopy again and I can go further down your esophagus and take a sample and send it off to the lab. Well, this time they did find something. They said I had Barrett's Esophagus, which can be pre-cancerous. They said I would need to get upper endoscopies every 5 years for them to "watch me", so I don't get cancer. I changed my food that I was eating. I told my Gastro Dr. that I was changing my foods, and I showed him the food testing results from the Internal Medicine Dr. Well, my Gastro Dr. wasn't real interested in the results, he said I don't know how to read this/results. Fast forward to 2000, I saw another Gastro Dr in another state, we moved to Ohio, use to live in Iowa. Now, it has been 4 years, and I have been gluten free and dairy free. Well, the interesting thing is I got another endoscopy and my Dr. said he doesn't see the Barrett's Esophagus anymore. I have had at least 5 upper endoscopies since the 2000 one and none of the Dr.'s see any Barrett's Esophagus going on, which is awesome! I cured my Barrett's Esophagus with food alone, just by changing my diet/foods. Huge success story for improving your health just by going gluten free and dairy free. If you have struggles with medical issues, I would highly encourage you to seek out a Functional Medicine Dr and get allergy testing from your Allergy Dr for foods. I had no idea I had problems with wheat/gluten or dairy. Until I got tested, I saw the proof that I had my results from my testing where I showed I was intolerant to it. Functional Medicine Dr.'s are expensive, so be prepared for that. Insurance will pay for some of it, however not usually all of the visit/labs,etc... Functional Medicine Dr's do a lot more testing with foods, lab work/blood work, stool testing, urine testing, etc... It is worth it, you and your health are worth the extra money, time spent seeing that Dr. I get way more attention from a Functional Medicine Dr. or alternative Dr., the visit lasts longer than my regular primary care Dr. I have an immune deficiency; I was getting anywhere from 6-8 sinus infections a year. I was sick off and on for about 20 years, it started out with 1 sinus infection and then the next year it was 2 and so on... Anyway, I got to an Immunologist to get tested and he diagnosed me with Common Variable Immune Deficiency CVID. There are over 400 different immune deficiencies! I am on infusions; I do them weekly to myself. Basically, my antibodies are on a permanent vacation. So, they don't do their job of fighting off infections. My medicine comes from Plasma donations, goes into a "pool" of other people's antibodies and it gets filtered and they add other medicine to protect me from Covid, rsv, flu, pneumonia, etc... It sounds like Brie; you may have an autoimmune issue-have you seen a Rheumatologist yet? Hoping they will test you or have already tested you for any type of autoimmune condition. If you don't get any answers, consider going to an Immunologist and getting testing with that type of Dr. I hope you get some answers to your issues, sorry you are struggling. I have a lot of fatigue with my immune deficiency. Praying that you find some answers and treatment for your condition. Hope this helps you and others!