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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God Bless You! I have fibromyalgia, both thyroid diseases & osteoarthritis all over. Covid flared all of that up. I went to a pain clinic recently and was told that in fact I was in a flare up due to long Covid. I am going to a Long Hauler Covid Clinic soon. I have been to several doctors myself and it's so frustrating.
This one really listened. See if you can get a referral into a pain clinic for an evaluation. Also, I agree, mast cell issues/histamine issues could be causing this for you since the antihistamines help. Covid (even a mild case) can cause issues with some people on down the road and not with others.
No words, if it helps we are all In the same boat.
Get shipped down the road.
I hear you and I'm listening. Like you, my journey began with unknown causes for serious symptoms. Over the course of two years my case was seen by eight neurologists. The first one suspected Cidp but her speciality was orthopedics. It took several months to been seen by a neurologist that did diagnose. Following another year of progressive worsening symptoms and countless tests I began receiving treatment last November. I am responding. My encouragement for you is to press hard for a neurologist, immunologist and or endocrinologist and seek blood work. Don't take no for an answer. Don't stop. I can only speak for myself. The process from first symptoms to treatment took time and I became more affected every month. I was discouraged and tempted to give up. Don't. Your story can be heard by those who can help you. Press forward friend.
@freebird195 It sounds like you have a lot going on and really need to right kind of doctor to help you. Have you asked your PCP for a referral to a rheumatologist. They are the ones to ask about painful joints. Here is a link to the group on rheumatoid arthritis:
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
Start a journal and write down all your symptoms (from the start) and questions that you have. Take this to the doctor when you go.
Can you ask for a referral? I’d really like to know what you find out
I also suffer from undiagnosed auto immune diseases.
Mine are consistent with MS and Reynauds and myesthenia gravies.
I’ve been searching for relief or treatment for 9 years.
To no avail.
Hang in there.
Be your own best advocate.
Im looking into lyme causing mine. labcorp neg, but quest gave me positive bands 58 and 93.
I am going through the same thing. It is extremely frustrating. My life revolves around when my next flare up is going to happen.
I have the positive ANA and several of those symptoms and when I tried going off gluten my tiredness and joint pain went away. I'm now being tested for celiac disease. I don't know what I'll do next if that's not the answer. Doctors don't seem concerned but I've been dealing with the numbness, itchy skin and hives for the past 10 years without answers and now the joint pain and tiredness make sitting at my desk and working everyday almost impossible. I can't afford to stop working. I would remove gluten from your diet for 1 month and see if that helps any. I've had to eat gluten for a month to do the testing, but will go off it again after the tests even if they're negative for celiac because it improved my worst symptoms. Taking Claritin every day helps the hives and the leftover itchiness is manageable. I don't do some things as much because of the numbness but it's not debilitating.
Fourteen years ago I went to a rheumatologist because of inflammation in my hands after getting H1N1. He was going to put me on a spate of medicines. I went off gluten to see if that helped; my GI problems cleared in a few days, my hands in one months and my skin rashes in ~8 months. So I didn't do the meds. Even if you have a negative celiac test(s), you can still have that or food(s) intolerance. My tests were all negative (mostly because the GI screwed up), but I do have celiac. I also have numbness from MGUS neuropathy. If you haven't tried an elimination diet to see if you have other food sensitivities, it is good to try, and keep a food log.
To Covidstinks2023: (Love your handle) They are trying Low Dose Naltrexone as a treatment for Long Covid now. Since it helps the immune system, and side effects are slight, so worth a try