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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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That’s excellent. How did the practitioner run the food sensitivies? I’d like to have that done.
And what will the diet do really
The Ketogenic Diet is not a fad. It takes into account the effect of Insulin, carbohydrates and blood glucose on your body’s metabolism. Look it up.
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1 ReactionHad that test very hard and expensive Just keep doing your food sensitivities testing that is what I am doing that other expensive test did me no good keep at it will work Barb
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1 ReactionMy daughter too. She has applied to Mayo in MN 3 times, and has been denied every time. It sure would be nice if they would accept complex patients!
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1 ReactionMy two CD kiddos are fully gluten free for sure. I do have a question about your comment on pork, poultry, eggs - I have never heard of avoiding them because of grain fed. I’ve never thought of it, but that is interesting. Any chance you have more information on that?
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1 ReactionKatie -
The gluten clearance time for grain eating animals like beef and pigs can be as much as 6 months.
For eggs and poultry most eat a constant diet of grains - mostly corn.
Keep in mind that the offending protein in wheat is gluten, and gluten is a component in many different seeds like corn, barley, oats and rice.
The reason CD patients can react to all these grains is that gluten is only partly digested into its component amino acids and that undigested amino acid cluster can trigger the immune reaction. The unusual amino acid reaction can occur to bundles as small as 15-20 - much smaller than the normal absorbed amino acid chains of 100+.
Basically, you can go in circles trying to connect the dots of a differing symptomologies, until you eliminate the multiple sources of gluten.
PS - Avoid any product that claims it is gluten free, when in fact the only gluten source that it does not contain is wheat!
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2 ReactionsI was diagnosed with MCTD at age 43 in 1996. I was on prednisone for awhile, segued to Methotrexate injectable, plaquenil (avoids organ involvement), zoloft (focus) and was on Etodolac (NSAID) for many years. I went off MTX at retirement as I was doing better, now off Etodolac until kidney study done. I do have specialists, including a pain Dr who prescribes Percoset for nighttime pain. I've been using topical things for pain like 4% lidocaine patch, KT tape to support joints (am hypermobile, touchy tendons)with you tube advice, ice/heat, biofreeze, epsom salt baths and CBD ointment. And what has been best over the years has been a non-processed diet (little sugar, avoid white potato, dairy (yogurt & cheese seem to be ok), orange food dye, aspartame, any alcohol and whole wheat. Very plain diet. And, a daily walk, water exercise and PT stretches have helped with joint and tight muscle pain. Massages are wonderful--I believe there's a fibromyalgia component to this, so movement, massage are really helpful. I find the stretches for sciatica and piriformis really help keep my sacrum and hip joint in place. I had a manual, osteopathic PT, but Dr Jo on you tube is great. I wear compression socks on many days to help with leg pain; elevation and edema massage and pumping feet helps. mctdfoundation.org has good advice; Terry Wahls is good reading on anti inflammatory diet; some have found AIP helpful. Crazy disease and overlapping conditions and I don't find the symptoms always connect with each other.
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2 ReactionsHas a total iron panel been done? Not just ferritin but also % saturation, ferritin, iron, and iron binding TIBC? Autoimmune diseases may be associated with iron deficiency, with or without anemia.
My health situation is similar, not necessarily identical except constant completely incapacitating fatigue, constant muscle pain, some dry mouth, completely dysfunctional gastrointestinal system.
No answers. I'm 66 and have been going downhill like this for about 6 years.
I've switched to a nearly completely raw fruit and vegetable diet and it does help -- when I eat a lot of complicated food that needs to be cooked etc, it makes me even more tired.
I have so much sympathy and compassion for all of us. I hope you can find answers
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