Undiagnosed Autoimmune Disease - No one will listen to me

all you can do is keep trying, I had gallstones for 10 years, before doctors in another state found it by accident (I hurt my back, so they did a full spinal) docs said it was indigestion /all in my mind, (I would like to know how they talked to each other before computers were invented). One doc even told me to find something better to do .

Since your vit D is so low with pills, the only and best solution is lots of sunshine. (Hope you do not live in a northern climate like me.) If nothing else works maybe even a little bit of improvement can help. Also, check your iodine levels and supplement if low.

Hla b27 positive is hereditary. So you must have inherited it from one of your parents. Do either one of them have any similar arthritic problems, ibs, Crohn's disease, and or have they been tested for HLA b27? Be aware that there's a 50% chance that your children will be too. It runs in my family also. Myself. ( Battling Breast cancer) And Two of t my three of my children ( my son 35 years old battling acute lymphoblastic leukemia Philadelphia chromosome positive.. My daughter 41 ) are positive, and symptomatic. Unfortunately Hla b27 positive also makes you more prone to cancer. Have you ever had any previous joint problems? Scoliosis, cracking and creaking joints, cancer, hypersensitivity (allergies?) Have you had any imaging mri with and without contrast, CAT scan, ultrasounds, fluid biopsies from your affected joints? That are pointing your rheumatologist towards his diagnosis? I was told that I cannot receive any type of biologics until they pinpoint exactly what kind of autoimmune disorder myself and my children have. We all have severe spinal stenosis, scoliosis. And are highly prone to infections, bruise easily, and extreme fatigue just to mention a few. Lol so far my personal diagnosis is levoscoliosis, severe cervical and lumbar spinal and forminal stenosis. Sacrillitus ,severe tendonitis, Dyputren's contracture , osteoporosis, inflammatory polyarthropathy, fibromyalgia, vitamin D. Deficiency, unspecified leukopenia , diverticulosis,uveitis, narrow angle glaucoma, sclerotic cataracts, senile cataracts. My Joint discomfort started in my spine when I was around 12, 13 years old. (My children also presented around the same age )And has spread and become increasingly worse and complicated with all of the other diagnoses since then with most of the non skeletal presenting within the last 5 to 6 years My doctors attribute some of my issues to my cancer radiation therapy treatments and side effects from the medications. Most but not all of my blood work has come back negative My ESR, bun creatine ratio, CRP, ANA and TSH, t4, t3 severely fluctuate .I am 59 and still undiagnosed. So I can completely empathize with your situation. I'm just confused as to why you're receiving biologics medication without a definitive diagnosis?

I'm so sorry to see all you are going through. While I have not experienced what you are experiencing. I did go through 6 years of gut issues - GERD (acid reflux), foods not being digested well, feeling fatigued. Each time I was put on the PPI, I felt great, but once I went off the PPI, my symptoms returned. After my third endoscopy
( scoping the GI tract), the doctor who performed the endoscopy told me to never take that med again because my cells were hypertrophic (meaning very enlarged) - the med is a PPI (proton pump inhibitor) which essentially reduces the acid in the stomach for digestion. Previously, I was also trying other over the counter remedies to no avail.
I was then left to figure this out since my doctor didn't know what to do if I could no longer take a PPI. I became familiar with Functional Medicine which saved me. If you are not familiar with Functional Medicine, it is looking at the root causes of your symptoms/illness, not treating symptoms. My FM doc tested me for so many things my other doctors did not test for - bacterial infections, yeast infections, fungal infections, parasite infection and mold exposure. I tested positive for ALL of those because my GI tract had become permeable - meaning it leaked these infections into my system.
If you are interested in finding one in your area, here is the website - ifm.org. You can search for doctor by city and state and read their bios and what they actually treat. It took me 2 tries to find the one that was knowledgeable with GI issues. I highly recommend functional medicine as again, they look for the CAUSES of your symptoms, NOT the SYMPTOMS. Treating the symptoms is a band aid but the infection needs more than a band aid to CURE you.
I wish you the best!

@beavermeadow82 My second suggestion is that you check out Mayo’s system of hospitals.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
These hospitals and care centers are all around the U,S. You can probably find one a short distance from you. You could also ask if they know of a Mayo-trained doctor in Xcity.
Let me know how it all works out for you!

Has anyone ever brought up Polymyalgia Rheumatica? Your high inflammatory enzymes might be a clue. The only med is high dose Prednisone till inflammation decreases . I had similar symptoms and 20 mg Prednisone got me out of a wheelchair. Doctors like to say it's a old person disease but more and more younger people are getting it. There's an international support group for PMR on FB.

I understand your frustration and empathize. I actually double-checked the name on this post to make sure I hadn't written it!

I've watched my health deteriorate for the last 5 years, with disparate symptoms going back more than 10 years. I finally went to a rheumatologist 3 years ago, who diagnosed me with fibromyalgia and put me on duloxetine. I was so happy to have a diagnosis, and the duloxetine (Cymbalta) made me feel better than I had. When my PCP found out I had been diagnosed with fibromyalgia, she suggested low dose naltrexone, which after a few months and adjusting the dosage (I now take 3mg/daily), which really helps with the overall pain.

But other symptoms got worse and new symptoms appeared: "attacks" of high heart rate, sleep disorders despite use of c-pap, dizziness, numbness, and so on. My rheumatologist, who had been so helpful in the beginning, kept insisting that I didn't have an autoimmune disease, nor did she see anything worrisome, despite a positive ANA, long-term anemia, high RNP, high creatine, low GFR, low hemoglobin, low creatinine. She suggested I get a second opinion if I wasn't satisfied, so I went to a neurologist (I have developed mild cognitive decline beyond what is normal for 75). In addition to other tests, she tested for light chains and did a skin punch biopsy. The skin biopsy ruled out Parkinson's but showed small fiber niopathy. My light chains were abnormal, so I went to a nephrologist, who believes I have chronic kidney disease 3a, but he is going to do further tests. I also consulted with a hematologist, who looked at my previous test results and said she didn't think I had multiple melanoma. At least she explained why.

I came home from my last doctor's appointment feeling like giving up. It's not that I want cancer or any of the other diseases I've been tested for, but I, like you, am so frustrated because I feel terrible, I'm getting worse, I'm obviously sick, but still no answers. I know doctors can't know everything, but I'm tired of being treated as if I'm making this up because the tests don't have the answers. I've been told "You're fine" (no, I'm not), I'm "wasting resources" (seriously?!), and I'm "diagnosis shopping" (if he meant I'm trying to find out what's wrong with me, yes, I am), and "You need to relax and enjoy life" (!@#$%!).

I realize I'm not offering any help here, but I empathize.

@gigi4 I'm a huge fan lf functional medicine and finding the root cause. I spent my life miserable (off and on, not constantly but enough that I missed out on lots) with gastro issues that a good 10ish Gastro docs would NEVER diagnose properly. It was my health coach (not a physician) who determined I had SIBO (Small Intestinal Bacterial Overgrowth) and it can be fixed! Yes, fixed, not take a pill and mask symptoms. That's bad and wrong in so many ways.

Trust me, it's not easy going through the fixing process and its back again (can come back if you get food poisoning, have to take antibiotics for something etc.) So once again Ive had to eliminate all FODMAPS, have to wipe my gut out of all microbiom and then eat fermented foods to help repopulate my large intestine with the good bacteria.

Leaky gut is also VERY real and you can work towards fixing the leaks. Eat clean, no processed food etc.

My current Gastro doc who I love because he understands SIBO and knows its a real thing and is the cause of most IBS issues. He told me, most are not willing to do the work, they want an easy way out and take a pill.

Personally, I want to get at the root cause and fix it or keep it at bay by following certain food rules.

Do I miss great pizza, delicious fresh baked bread etc etc. Yes, all the time, BUT and its a big butt 😉, I want to ski until I drop dead which means I need to keep my body in as best shape as I can.

Happy to speak to anyone directly about my SIBO journey. It was a long one.

Hang in there, we're in this journey together 🙏 ❤️

@susanmaria
My vitamin D has been low for a number of years now and im outside a lot and take supplements. Doc said to up them again but my suspicion is its an absorption issue in connection with my chronic SIBO. Which, is back again and I have to go through the whole "wipe my gut" out of all microbiomes and then eat fermented foods to put the good bacteria back where it belongs, in the large intestine, NOT the small one - that breaks havoc on your body in MANY ways.

Anyone with IBS should read up on SIBO. My fave book is called Healing SIBO.

@wendy517
Yes, the journey is a long one and it requires being consistent almost 24/7 to not have SIBO return. I do enjoy a favorite treat now and then for special occasions. Like you, I want to keep up with my activities and I love tennis and have played for years. I want to still be out on the tennis courts when I am into my 80's, which are quickly coming my way!
Yes, it does require work and Western medicine is mostly all about the pill. If only it were that easy. But the best in life is not easy. As a friend says "If it were easy, everyone would be doing it."
If you want to eat fresh baked bread, there are gluten free options. I eat sourdough bread because it is fermented which is allowed. It's my go to bread. Seek out restaurants that offer gluten free meals in your area as well.
Best to you and keep on skiing!