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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I tried Naltrexone a few years back (Not for Long Covid) and I had side effects from it and had to come off. It worked great for a while. I wish I could have stayed on it. It helped greatly with inflammation and pain and I was put on it for Hashitmotos (Hypothyroidism). I wish you the best with it! Blessing....
My wife has autoimmune disease (Sjogrens, Hashimotos and Lupus). Her PCP saw symptoms like dry eyes, dry mouth and enlarged glands (did an xray and determined her salivary glands were enlarged). Also did bloodwork and found high C-reactive protein and SED rate. She was referred to a rheumatologist. Long story short, she had years of temporary flare-ups until December of 2022. Then she had terrible inflammatory pain in groin, legs, arms and shoulders. Her rheumy tried one round of steroids, which didn't work. She went through 7 images (CT-scans, MRI and bone scans. She saw an emergency room doctor, orthopedic surgeon, neurologist and pain management doctor with no relief. Finally, her PCP (not the original one) said she was putting her on another steroid regime of 20mg prednisone per day and that worked. Hoping and praying you get some relief. God Bless
Can you share with us the kind of side effects you had? I have only experienced the vivid dreams that stopped after a while. (Mores the pity. They were like broadway musicals sometimes.) So sorry it didn't agree with you.
suetex, Yes. I was having peripheral neuropathy symptoms in my arms & legs....especially when sleeping. My primary was not aware that I had been put on Naltrexone by my Endocrinologist. When I went to see my primary physician for the symptoms he asked if I was on any new medication. I told him about the Naltrexone. He wasn't familiar with Naltrexone and looked it up on his ipad. He told me to get off the drug immediately. Two of the side effects were migraines (which I already suffered from) and peripheral neuropathy. I will add, that my B12 was low and that can also cause peripheral neuropathy symptoms. I came off the Naltrexone and got B12 injections and the peripheral neuropathy symptoms went away in 2 weeks and for that i am grateful. I have to say I have had low B12 again (I am presently on B12 injections) and did NOT have peripheral neuropathy symptoms at all this time. I cannot be 100% sure that it was all Naltrexone, but, I have a gut feeling it was. I hope it works for you. Blessings.....
It seems unlikely that the low dose Naltrexone would cause peripheral neuropathy. A number of people who developed peripheral neuropathy after Covid or the Covid vaccines are taking low dose Naltrexone and it's helping their neuropathy. The B12 deficiency would seem to be the more likely cause of your peripheral neuropathy. As you probably know, vitamin B12 deficiency is a known cause of peripheral neuropathy.
I went through the same thing in March. My rheumatologist diagnosed me with Polymylagia Rheumatica (PMR). The protocol is prednisone, and it’s the only thing that helps.
Our rheumy was very, very reluctant to give a diagnosis of PMR because, as she said, the first round of prednisone (6 day medipak} did not work well. After all the images and different doctors, she has finally determined it is PMR. We are just grateful our, PCP, tried a daily dose of prednisone.
I would see a good naturopathic doctor. They run more lab tests. I would eliminate wheat and dairy and sweets. Start with one and see if it makes any difference. Sometimes eliminating meat make a difference as well.
She has given up red meat and dairy for years. Sweets..hmmmm. For now prednisone is doing the trick. She is even back on the treadmill. Thanks and God Bless.
I was born with migraines but manage to control them later in life and the LDN did not trigger them. I'm sorry you are one of the unlucky few. It seems to bear lots of promise to those of us with unruly immune systems Best of luck...