Undiagnosed Autoimmune Disease - No one will listen to me
Hello All - so would love some advice or thoughts.
I'm 43, wife and mother of 3. In May 2017, healthy but slightly overweight, I went to visit family in Texas and had strep throat (which I had about 4 previous times in the previous 2 years). Took antibiotics full round, returned home. Two days after finishing antibiotics, I woke up and could barely even move (couldn't even pull my covers over me, barely walk, severe joint pain muscle pain, you name it. Went to Doc and they sent me to rheumatologist.
They ran so many test with really no avail. The only thing that came up positive was HLA-B27. At the time ANA was negative.
Over the last six years it has been just so much joint pain, muscle pain, muscle weakness. They tried plaquinel first, nothing. Then started my process of biologics. I moved rheumatologist a couple of years into it and she ran more test, but still not much answers. I was put in the spondyloarthropathy category, but really unspecified. My new rhematologist over the last few years has been thorough but has really put me in the complex sector of things. Here's current breakdown:
> have Chronic Kidney Disease, unspecified found in 2008 with proteinuria only; two kidney biopsies only showed some scarring but nothing else
> Clinically: Knees, Elbows, Ankles feet inflammed, swollen, heat; muscle weakness in arms, some tingling in arm and thigh; right SI joint pain (chiropractor manages well); weight gain from predisone and lack of mobility); ringing ears, tops of hands swell for several days at a time; ankles swollen throughout day; itching skin, some low grade fevers at time; High blood pressure; fatigue, cant focus; memory bad
> CRP and ESR both elevated in the 80's - 100's most of the time, can dip down to 50's, 30's if biologic works
> New last month ANA: Positive, 1:2560, Homogenous
> ANA Antibidies: dsDNA was 1, all other antibodies were <0.2 (ALL within normal range) :/
> Vit D: deficient (lowest 11, highest 32) last 5-6 years, currently on 100,000 dose
> Vit B: also low, currently taking injections every other week
> Homocysteine: elevated
> CBC: all normal except elevated WBC (prednisone) and HBG slight low; RDW slight elevated
> CMP: all normal except for creatinine (High) and GFR (Low) from CKD
> All GI scans normal (with only a little GI involvment)
> On my six biologic with doc submitting under Ankylosing Spondylitis
> All Thyroid testing normal except Reverse T3 Elevated
> No RA positive labs
> Started seeing Functional Medicine Practitioner and did mold testing, negative; she is going to help me get rid of inflammatory foods to hopefully help some
Really just frustrated at lack of answers! I know my Rheumatologist is doing her best…I’m just complex. My insurance just denied my next infusion because of dx of 'undifferentiated spondyloarthropathy' being experimental. Doc is considering change of dx to seronegative RA so we have option of a IL-17 drug instead of TNF Blockers. So trying to consider that option.
Any thoughts would be greatly appreciated.
Thanks!
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Blessings all!😇🙏🌈
So sorry to say I’ve had same symptoms Andy no doctors who gets it!
I’m going to try another neurologist- last one just had me look up and down etc. and said”no problem”
I know it’s related to COVID ax alerting my immune system!
Keep trying. Good luck!😇
Has she been tested for Lyme Disease? Sadly Lyme Disease doesn’t always show up in the standard blood test they use to check for it. The joint issue you mentioned made me think of Lyme. I had Lyme and every joint in my entire body hurt. It got to where I couldn’t hardly get up off the sofa. A rheumatologist tested me for Lyme and I only had one marker. I researched Lyme and I knew that is what I had. I contacted my general practitioner and she started me on the medication for Lyme. By day 5-6 my joint pain started to go away. Most people never know they have had a tick bite. I had a bite but never got the bullseye rash. Not everyone does. Our family had a place in Wisconsin near a lake, one of my nieces and her daughter both suffer from long term Lyme. If you feel she may have Lyme please find a Lyme literate doctor.
I contracted Covid at the very beginning of the pandemic. Former personal trainer, zero pre-existing conditions. Convinced Covid has changed my blood vessels. In the two years since I have suffered from severe fatigue- slowly abating- and a host of other conditions. All of the ones you mentioned and more. The numbness stopped 6 months in, the severe itchiness has not gone away. Lymph nodes are back to normal etc. Forget Lyme disease, you were bitten weeks after. I’m now two years out and I’m mostly back to normal. Fatigue has improved 80%, I can exercise at a similar level. Don’t get discouraged with Dr.s and all tests revealing squat. Covid has affected us at a cellular level and these weird manifestations are just the response. Try and stay positive and keep putting one foot in front of the other while eating well, keeping a sleep schedule and move your body every day as best you can. Eventually the scientists will tell us why we all suffered these bizarre side effects and what might be done to rid us of them for good.
Take good care.
Sorry for your problems. Has your family/general doctor ordered the basic blood tests for inflammation and if so, did they show anything? Have you ever had a Prednisone Z Pac ordered; did it help?
What is prednisone a pac. I know the Z stands for azithromycin and the Z pac was the 5 day course treatment in one package . Prednisone taper pack goes by another name. Do you happen to know what the tapering dose is over 7 or 10 days?
Sorry, I just know the Z Pac is a 5 day treatment. Tapering depends on what dosage you're starting with.
I just happened to peak in today, not really expecting anything. But when i heard prednizone, wow! That is my experience too! The difference is that my specialist told be to give it a try. I felt like a humannagain for 3 days. That was when he said you have an idiopathic autoimmune disorder. Sadly in stated crawling the walls, so i had to stop. And once again i am on steroids to treat bronchitis following covid. I am not well, but in still feel like a human again. The issue is that this information never gets discussed among my variety of specialists, or it. Gets poo poo ed. I realized this week that im have been hiring carpenters all this time, and they auto see the solution as a hammer and a nail. But over 35 years now, i just get sicker and sicker. I gotta find me a general contractor!
No doctor has mentioned psoriatic arthritis, lupus or anything. Go from Dr to Dr and am dismissed. Wish my old veterinarian were alive
@3pelican -
Interesting- I had the same experience with Prednisone when I was seeing GI at Mayo for a GI disorder- not yet diagnosed as autoimmune.
I was on prednisone occasionally for asthma, bronchitis etc. I also felt normal for a few days- even losing several lbs water weight.