Autoimmune type issues for years without clear diagnosis

@mviscomi that is great! I assume you needed a referral? I don't know if anyone would want to give me one tbh.

@yellowfleurs I was able to submit a form online directly to the Clinic. I don’t remember the exact process but it was pretty straightforward. What I had going for me was a super high autoimmune antibody, extensive testing, and lots of symptoms that straddled rheumatology/neurology but no diagnosis. Have you been to various doctors in the past and or recently?

Unfortunately for us, that is the way of autoimmune diseases. Antibodies are fickle and lab tests are not the greatest! Often they don’t pick up antibodies that are there because they are too low yet cause problems and sometimes they just don’t show up yet the symptoms are still there. In my case, they figured my tests would be negative because my tests for RA were negative and they called me sero-negative RA…we were surprised when antibodies for Sjogrens and ANCA Vasculitis showed up at very high levels! At least there was an answer for my symptoms! Hang in there! Praying for you!

@mviscomi thanks I'll look into it more. I do have a rheumatologist who is listening to me now but also unsure of what is going on other than maybe seronegative spondyloarthropathy or post treatment lyme. In the past rheumatologists brushed me off(other then when I was told maybe reactive arthritis but then he retired) so I'm grateful. I also saw neurology after my POTS flare and a POTS specialist. My symptoms were severe enough I was hospitalized in 2024 but all I got was the POTS diagnosis in the end (which I suggested they test me for haha). I have an ENT following my enlarged lymph nodes to make sure no biopsy needed. No one is really paying attention to the subcutaneous symptoms though. I was told I could get the lipoma removed if bothering me but that it shouldn't be causing all my symptoms on that side. It really seemed to pop up at the same time though. It's hard to get everyone talking and considering the different overlapping symptoms!

I'll also add I did briefly have trace monoclonal antibodies with igg kappa light chain show up but hematology retested after a few months/ after the steroids and they were gone. They said probably a false positive? I'm not worried about cancer but thought it interesting it showed up along with my immune symptoms

@fairn I'm glad the meds helped you! Did it help your tendon issues too? I've been wondering if I have gastritis tbh but an endoscopy a few years ago was normal, although i had taken months of pantoprazole at that point. Do you get a dry cough and shortness of breath ever? My chest xray was normal but it comes and goes and went away with steroids during my last flare. My HLA-B27 was normal but I know it's tied to a number of things(tested due to reactive arthritis history).

It has helped pretty much anywhere I have had inflammation. I still get some edema and tenderness above my knees around where the tendons attach. Yes to the dry cough, I have been diagnosed with asthma for several years. I was told I had 'mild apical scarring due to prior granulomatous disease' but no answers as to what that was. Now I know it was probably autoimmune, possibly Sjogren's. The other diagnosis has been Undifferentiated Inflammatory Arthritis, which means they don't know which category it falls into yet. I am thankful for a rheumatologist who is most concerned about treating the inflammation and takes the time to see what is going to show up over time.

@fairn that is great it helps most of your symptoms! I really thought I had asthma at one point but the pulmonary function tests were fine. I may not have the same thing going on as you but some of it sounds similar and my rheumatologist did mention I could try hydroxychloroquine as an alternative to the methotrexate or sulfasalazine that are often used for spondyloarthropathy. He also prescribed me nsaids, but while they have always helped my tendons they're too hard on my stomach. Sort of wish they would just biopsy something to get to the bottom of this though!

I'm 77 years old and have been struggling with sero negative auto immune issues for over 20 years. I've had bilateral total knee replacements, total reconstructive surgeries on both feet because of RA type deformities that made me unable to walk on my feet. It seems now that my family has hypermobile EDS and I have symptoms of that as well as Vascular EDS. I feel your pain. I also have unexplained neuropathy of my face and feet and legs. It's so difficult with the present medical system in the US to get doctors to listen and understand. I have scoliosis from disc degeneration and went from 5'4" to 4'1" and have constant pain. The only relief I've found is injections and medication but nobody will Rx even Tramadol for pain anymore and nothing but Belbuca has ever helped. Functional medicine is extremely expensive and not covered by Medicare or insurance. Acupuncture helps if you find a good acupuncturist. Massage and physical therapy seems temporarily to help. Hot baths with Epson salts...but I can't get in and out of my bath safely.

My grandmother had such unusual auto immune symptoms that did not show up till she had her first heart attack at 43 years old unfortunately she had gone through a lot prior to 43 years old and had not drank alcohol a day in her life until she met her last husband who was more abusing than most people now a days could ever be which was horrible for her, she drank starting at 38 yrs old and it was 24/7 Drs told her that is where the heart attack comes from; she was on oxygen for the rest of her life till she died in 2001 at 78 yrs old
The reason I tell you this is because back then even though we have come a long way in some things we now in many states have gone backward on Drs themselves; my personal Dr. is great but being a PCP prevents many of them now a days from going forward. They will have to get you to a specialist . It is that all mighty dollar. It is why instead of 30 mins with a Dr like it used to be back in 1990s up until about 2006 ish for my experience, you see your Dr for 5 mins 8 to 10 mins max now .
Reality is when your body has several things such( as I was born to a Marine who had spent weeks in Vietnam prior to them dropping Agent Orange right where they were all stationed and months and months after it was dropped on top of them, ) My father spent months along with every one there military and native, they all had many issues from the A. O along with every person in Vietnam and other areas as A O. was not isolated. Just like anything wind and Weather carry things. I was born with Hip Dysplasia ( Well known A. o issues) 6 fingers on each hand and I have more breathing issues now but even as a kid I’d get sick easy .
Oddly enough I have not had any other issues except COVID-19, Omicron, and Nimbus 3 months ago. I have not had the flu or even a cold come on since the initial Covid 19 back in Feb of 2020. I was Diagnosed with Long Covid in mid to late 2020 they diagnosed me with Myalgic Enchephlimitis and CFS/ which only symptom at the time April 2020. I still only had Severe fatigue that is nothing like it started showing up in June of 2020 and forward to this date so far. Like I said I got COVID-19 in Feb 2020 and 4 months later I had and still have COVID toe, my eyebrows fell all out for 0 reasons if seemed and I got bad acne out of no where. My eyebrows only grew back from the inside to half way out . So closest to my nose and half way out.
1. I had a high paced job at the time of getting original COVID that I had been with for many years , had been going through premenopausal stuff prior to 2020 as well which is why I believed at the time the fatigue was there. That type of fatigue compared to the auto immune type are not the same at all. Any type of Auto Immune type of symptoms from dealing with several hundred patients in my life career you find most of the symptoms are compounded and worse than the average situation where it goes away. PASC( Long COVID) so far has never gone Way for me.

My symptoms of Long Covid (Post-acute Sequelae of
SARS-CoV-2 Infection (PASC) have been so much harder to keep track.
It becomes the body ending up in an overactive Immune system over time, which happens in many Auto immune disease. For PASC it is because the body knows there are microscopic particles left of Covid19 which the immune system is unable to locate, so it keeps trying to protect the human body the way it is supposed to except it actually wears itself to a point of overactive .
No not all cases of PASC are from just that, but I’m my case it is and millions of others it is The issues I have lived with my entire life seem to be in the back. I started taking DHEA it works amazing for my brain fog to go away it gives me back myself mentally the fatigue isn’t so bad however By Winona amazing place but for some of us we end up with Acne from the DHEA through them. The Dr said to skip it every other day it brings it down but not stop . Long Covid for me depletes everything quickly inside my body. Medicine especially nothing last the amount of time it should . I started with 25mg I was impressed after 2 weeks and by the end month the acne started. Now they say this is from to high of a dose, for many of us it is not . I am on my second 3 month cycle and now it feels taking it every other day like I take nothing again. So I am heading to a specialist to get something for DHEA that won’t cause break outs.
The biggest issues are severe physical Fatigue and inflammation from head to toe inside my body and outside . I have had every single symptom of PASC but a few and those Few are major heart issues and no seizures, I am lucky so far .
I spill all of this info wondering on top of your already overactive immune ( Autoimmune ) how much has now started due to PASC, the symptoms I initially started have toward June 2020 till now they started very slow, some of them cycle out for example my hair since I got One of the variants in Dec 2021 I started to lose my hair 4 months later( no it was not falling out in large amounts of even little amounts) I’d brush my hair nothing was different. It took till middle of 2024 before it started to grow back. I was lucky it was only a 2 inch area but in the front of my head. The severity of the symptoms come and go that isn’t normal either..
Sorry to rant it’s just I wonder how many of us have ended up after having to fight our own bodies prior to COVID 19 are now living with PASC . FYI… There are many things that do help the issues, natural, better diets etc. DHEA helps women in pre and post Menopausal with autoimmune but you have to be careful as it can cause bad acne for 0 reasons some people due to ro much of the MG others like myself it's the specific brand type, it's hard to tell for some. an tell but it helps the brain stable back to normal . It’s due to the body being depleted of all its natural vitamins and minerals no matter what you eat and drink unfortunately the body is Overactive trying to get rid of the COVID and can not locate it so it won't keep in what it needs which is why things stop working after short times .
I'd be happy to chat and happy to hear what helps you as COVID 19 for many of us is an Auto immune issue now