undiagnosed autoimmune

That sounds very frustrating and painful. Have you been tested for vitamin deficiencies and have you had covid? Does autoimmune run in your family? Some of your symptoms sound familiar.

@jgk177
Welcome to Connect!
I’m so sorry to hear how you have been suffering!
I have gone through similar illnesses a few years ago. No test said autoimmune directly, but an assumed possibility when I was tested and treated at Mayo. I had mostly GI symptoms and extreme fatigue. After a few years it was decided it was a form of autoimmune and I was treated with immunosuppressants.
Before this treatment I always improved when I was given prednisone for my asthma and budesonide for GI symptoms.
I had my last mini- flare a couple of years ago.
What food sensitivities have you developed?
I assume you must have been tested for celiac disease.

I have… I don’t know that I can recommend anything else beyond what you’ve been doing, except perhaps trying to see a provider at an academic medical center or going to somewhere like Mayo or Cleveland Clinic that does a larger-scale evaluation with integrative departments, if you haven’t done so yet.

I’m sorry this is happening to know.

But I figured I’d tell you something similar happened to me. Ultimately, I was diagnosed with seronegative spondyloarthropathy (an inflammatory arthritis that by definition doesn’t show elevated inflammatory markers). The working hypothesis is it took so long to be diagnosed (3 years) with inappropriate PT that made it worse that something called central sensitization set in.

Central = Central Nervous System. When someone is in pain for a long time your brain can get hard wired for pain and become extra sensitive to stimuli sending out more insistent and worse pain signals. I developed GI issues, fibromyalgia, widespread pain, headaches, etc. Then it turned out I also have POTS and hypermobility. And Long COVID.

So there are seronegative autoimmune conditions. I’m most familiar with spondyloarthropathies because it runs in my family: It can include reactive arthritis and inflammatory GI conditions.

Hello @jgk177, I would like to add my welcome to Connect along with @celia16 @astaingegerdm @emo and others. You are definitely not alone. In fact we have 20+ discussions and 130+ comments from members on undiagnosed autoimmune conditions. You might want to scan through them to learn what others have shared. Here's a link that shows the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=undiagnosed%20autoimmune.

Do you mind sharing which symptoms bother you the most?

Hi,
It sounds very familiar to me. Look into Dysautonomia / Autonomic neuropathy and Autonomic polyneuropathy. They are different from autoimmune but with similar symptoms. They are associated to the Autonomic nervous system and can be devastating. With some symptoms being random in nature while they can also be permanent features with no known cure or treatment , as yet. It is difficult to diagnose and can affect people differently.
I get light sensitivity with eyes that are slow to react to light, aches and pains throughout the body, sound sensitivities, brain fog, instabilities/ vertigo, memory loss at times with poor cognitive abilities, throat restrictions, making it difficult to breath, difficulty walking and shuffle along, migraines and headaches along with my BP being interfered with, all random hits. Then I struggle with bowel, bladder and poor digestive issues, permanently. Very occasionally it interferes with my heart rate. Basically it is the nerve ending getting and receiving corrupted signals to do what the body does without you think about it. My being poly I get the symptoms normally associated with diabetes which compromises the second major nerve system in the body, like; legs, arms, hands and feet are affected. My only remedy is to sit it out and hope for a better day to follow.
Cheers

@jgk177
What types of doctors/specialists have you already seen? What tests have you had beyond bloodwork? Did any of your bloodwork show abnormal levels or very close to high/low of the “normal” ranges? Did you get allergy and gastro testing (endoscopy/colonoscopy/HYDA scan of gallbladder)?

Since you have pain in your lower back and pelvis, you may need MRIs of lumbar spine and pelvis/hips if you didn’t already get them. You may also need small fiber neuropathy skin punch biopsy which may cause some of your sensory/motor/autonomic (heart/digestion, etc.) symptoms.

Did you get a full iron and thyroid panel done? I was found to be iron deficient and had thyroid autoantibodies where my body was attacking my thyroid (Hashimoto’s). My primary and rheumatologists were not much help to me. My neurologist did the small fiber neuropathy/EMGs/MRIs for me but didn’t really offer treatments. My gastroenterologist found I had esophagitis, gastritis and my gallbladder stopped function which caused me abdominal pain. I take Omeprazole 20 mg now and supposed to have surgery to remove my non-functioning gallbladder soon.

Good luck getting answers, diagnosed and treated for your symptoms. Like you, I had a constellation of symptoms that can overwhelm specialists since they have a narrow focus for their specialty. Maybe prioritize your top 3-5 most challenging symptoms affecting your quality of life and focus on getting tested/treated for those. It took me 8 years and many doctors/tests to get the puzzle pieces of diagnoses. Don’t give up getting answers and advocating for yourself.

Psoriasis is not just a skin condition.
There are multiple systemic concomitants. It can evolve into psoriatic arthritis with axial spine
involved. In some cases there can be
autonomic neuropathy. Dry eye is common in such systemic inflammation. Confirming psoriasis with a dermatologist and using one of the screening test algorithms forPsA is a start. Lab test are often negative and you may also consult a rheumatologist. A multi specialist clinic can help arrive at diagnosis and treatment. It is a clinical diagnosis that can be overlooked.

Collect and know all your tests and keep advocating for yourself.

Have you been to Mayo? I have an autoimmune called DPPX. It took a year to diagnose it. My blood work was originally sent to Mayo the hospital I was at didn’t catch the DPPX diagnosis.

I agree with getting into a dermatologist to confirm the psoriasis and many of your symptoms and the flares can be the systemic problems that accompany psoriasis. The bladder problem sounds like interstitial cystitis, inflammation of the bladder lining that feels just like a UTI but there’s no germs or infection present. It is diagnosed by a urologist who will likely want a cystoscopy done. There are preventive measures and treatments for this. A gastroenterologist for the GI issues, allergist for food sensitivities, opthalmologist for eye inflammation and rheumatologist for the rest would all be appropriate. Someimes you have to see several specialists for each problem and then hope someone like the rheumatologist can put it all together. It certainly does sound autoimmune and is very frustrating to go through what you’re experiencing. Try to take one thing at a time, working from the most problematic to the least. Also, take pictures of anything you can since the signs may not be present when you see the Dr. eg, the eye inflammation. I think the dermatologist is the first one I would see, hopefully when the psoriasis is present, so a biopsy can be done if needed. This may be psoriatic arthritis before the arthritis actually develops, which can happen. Good luck and keep seeking answers so you can get help and better quality of life. In the meantime, try an OTC anti inflammatory medicine like naproxen or ibuprofen when the flares occur. It also helps to get any bloodwork done when symptoms are present, as abnormal levels are more likely to show up then.

Hi there. You might want to see if they can test u for Group B Strep disease. Here’s some info which sounds like some of your symptoms. Ask your mom if she was sick when she gave birth to you. This is passed down thru birthing if not treated. My daughter in law has this. Hope this helps. ❤️🙏

Many adults carry group B strep in their bodies — usually in the bowel, vagina, rectum, bladder or throat — and have no signs or symptoms.

In some cases, however, group B strep can cause a urinary tract infection or other more-serious infections. Signs and symptoms of infections that may be caused by group B strep include the following.

Urinary tract infection

A strong, persistent urge to urinate
A burning sensation or pain when urinating
Passing frequent, small amounts of urine
Urine that appears red, bright pink or cola colored — a sign of blood in the urine
Pelvic pain
Blood infection (bacteremia)

Fever
Chills
Confusion or lack of alertness
Pneumonia

Fever
Chills
Cough
Shortness of breath
Chest pain when you breathe or cough
Skin or soft-tissue infection

Swelling, warmth or redness in the area of the infection
Pain in the area of the infection
Lesions with pus or drainage
Bone or joint infection
Fever
Chills
Swelling, warmth or redness over the area of the infection
Pain in the area of the infection
Stiffness or inability to use a limb or joint