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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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So you end up being your own doctor. Been in that spot myself. My advice would be to read, read, read. Try to limit yourself to articles with good references. But if not, be aware of the shortcomings. Myself, I have the opposite problem. I am low cortisol. I have glaucoma and have to be careful how much I am boosted. I think we all become experts in our conditiom and it is a wise doc that is aware of this. Hang on to those.
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2 ReactionsDo you mean Epstein Barr Virus? I was an RN used to abbreviations but not when it comes to this message board! Epstein Barr at 21 set me up for a lifetime of autoimmune illness. My energy and health were never the same after that. Thanks.
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1 ReactionWow... sorry to hear you've been through quite the ordeal. And I'm sure just to stress the uncertainty and also lack of answers has also created quite a bit of angst & anxiety in your life.
( Haven't started off with 2 full knee replacement surgery (fully replaced both last 9 months)and having to wait literally almost 6 years to get that recently completed ... also find out previously I had a rare IMMUNO blood disorder (Thrombocytopenia), I can identify with some of what you are going through...
I believe one of the major items you mentioned is that you have kidney disease. If I've learned anything over the last 3 years, it's the importance of the different organs within our bodies and I can tell you that the kidneys rank right up there near the top of the list for critical functions
Itchy skin is typically associated with toxin buildup in our body and them being excreted via our skin's pores. We do it via sweating regularly. There are many, many things that are a body does not react. Favorably to it could be medications. It could be certain foods. It could be certain chemicals. There is an extensive list and since different people are different... It is often hard to pin that down.
There is no question that in its many forms, from Rheumatoid Arthritis to Osteoarthritis, both are fronts for inflammation! And inflammation CREATES MANY MANY PROBLEMS in the human body when present and left unabated.
Inflammation of the nerves is MS! Inflammation also attacks organs! inflammation attacks the blood circulatory system. Inflammation is HIDDEN enemy number one!
Inflammation is the driving force behind most auto immune diseases. ( Because it attacks, altars and even destroys cells and cell membranes! )
Inflammation that I had from my swollen bad knees over the many years... is what caused my blood disorder! And my Osteoarthritis is what gave me problematic knees.
You appear to have kidney disease as well as major inflammation issues from your Arthritis... and I don't know how long you've had the Arthritis, but Arthritis comes with inflammation; it would seem that a lot of the symptoms you have are being derived from the effects of inflammation on other components of your body.
YOUTUBE EXCELLENT RESOURCE... There are many excellent videos available free on YouTube on inflammation, as well as the best natural foods that help fight inflammation. And I would hardly recommend that you visit YouTube where you can search for that key information. There's also hundreds and hundreds of videos on YouTube about many other health challenges and health conditions that you might find of interest.
DIETARY REVIEW...of exactly what you've been consuming as your main staple of foods with your doctors may be a very insightful endeavor because we are what we eat! Kidney disease does not typically develop overnight, and your body seems to be saying. It has major issues with the particular nutrients in your intake / diet, or chemical environment that you are around or have been in.
In many cases, our bodies respond pretty quickly to a correction in diet and/or environment. And often better nutrients provide the assistance our bodies needs in order to start healing itself or start improving.
HEMATOLOGIST... Usually are the folks that are involved whenever there's any question of whether or not an individual or patient might potentially have an immune base disease! They're blood doctors. And they typically direct the rest of the doctors, including surgeons because everything in the human body depends on the state of your blood. The blood is the key.. it typically has answers. Or can direct doctors to specifically find those answers. Most things in the human body show up in our blood.
I highly recommend you see a Hematologist asap. I don't let anyone treat me unless my Hematologist says so...
Wishing you answers...
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1 Reaction@gymratca You sound like a nurse!
I'll take that as a superb compliment...thank you.
(Designer & former Plastics Engineer)
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1 Reaction@gymratca - it is in fact the ultimate compliment given that Becky IS a nurse!! 😉
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1 ReactionLol...well I'm but the fortunate recipient of some shared medical knowledge from some great & caring professionals...and years invested in reading & following Medical articles from Mayo Clinic, WebMD, and a multitude of other online resources....driven by my own health interests & challenges
🏋
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1 ReactionSo sorry you’re suffering so! I was glad to see that you’re going to have a food sensitivity test done, as I believe it could be what you’re eating. High Histamine in your body as well, I would say, plus, you may also have Hashimoto’s and a possible thyroid condition. Have your Thyroid Labs run and include TSH, T3-free, T4-free, Reverse T-3 and TPO Antibodies. I have both Hashimoto’s and Hypothyroidism, along with high histamine in my body. I also have Long Covid and haven’t tasted or smelled anything in almost 3 years (December). Good luck!
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1 ReactionYou have had a lot of tests! After two yrs my docs are not sure which auto immune disease I have. I have. Done 5 months of infusion with OCTAGAM. No help. I. Can no no longer walk, my sleep is poor. I’m on prednisone but problems have started there. I am now seeing a Neurologist I’m sure he will lower my dose. I have been advised to go to a University that does research into my problem. We have a Mayo clinic in JAX but it is a horrible drive. I have been to Uof Florida. Any ideas from anyone? Bev
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1 Reaction@beavermeadow82 Welcome to Mayo Clinic Connect! Gee, you’ve seen everyone! Ask your PCP for a referral to a rheumatologist at U. Of Florida. Have you seen one yet? They are the specialists in autoimmune diseases and should really be able to help you. Do you have someone who can go with/drive you to MayoJAX?
Ask your 2 doctors if they will refer you to THE best doctor in your part of Florida. They should be able to do that! I’ll keep my fingers crossed for you!
I have 1 more suggestion but I’ll save it for tomorrow.