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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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In our world, where every little bit of our bodies, minds and relationships is open to scrutiny, there is no reason a person can not at least find a few clues to what is happening to them. But this does come across the transom far too often. When this comes, I believe the place to start is with the whole process of Genomics, the hints of being what we are. If I want to use insurance of any kind, I have to use the Samaritan system, and there I am certain to be ripped off, then ignored. But if I can spend my own money, and not rely on insurance, There is a way. There are firms who will investigate your genetics, and tell you (for a fee, of course--a few hundred $) what your body is messing with. Sequencing.com, Nebula Genomics, and dozens more, will spit out millions of details to help you find your answers. And you will pay for interpretation. But the largest problem is to challenge the ego of your MD, DO, Dentist PA or whatever. Anyway, I suggest you get into the world of genetics/genomics. I have about 400 genetic issues which are listed by NIH and others as Pathogenic or Likely Pathogenic. I am probably close to death, but I even got a letter a few days ago, making the arrangements for a consultation with a group to work on my issues. However, there was one issue. That group did not give me a name, an address, anything which would tell me who they are. The other issue is cost. I consulted with a group within the Samaritan system. The doctor told me the whole process would be covered entirely. They took the samples, and had them analyzed. THEN the MD gave me a personal bill for $4,000. I suggested another place to put his wasted ego. oldkarl
I joked w/ my friends & family I was studying for my google doctorate. Honestly, at first, I did fall into the same pit everyone likely does, creating the overwhelming worry of "It could be this..." or "It could be that..." This was all so foreign to me - how I felt, what I thought and how much life as I know it seemed to just change in an instant. No one in my family has any auto-immune disease diagnosis. So, that alone, was an education in itself - trying to wrap my very black/white brain around a very gray concept and all it's shades of blending that AI diseases tend to do. Then I decided to shift my search to just simply understanding terminology, conditions or science behind things (how some cells are receptors, some are activators, some are helpers, some are ninjas who morph into other things, some are the bodyguards and some are the attackers, etc.) I felt that so many people who receive a shocking diagnosis of any kind say they just went numb or didn't hear anything the doctor said after a certain point in the conversation - my goal was to enter the room well aware of the terms or conditions the doctor COULD say we're dealing with and be able to even offer an inquiry or request to look into something when they weren't sure what they were dealing with or what avenue to travel next. I believe by doing this, I made sure my precious time was never wasted with needless appts and above all, I ensured my thoughts and suggestions were valued by the doctor treating me. This created an open dialog between the physician & me, the patient with mutual respect and kept the fire lit under their XYZ to not stop figuring things out until we both felt we fully understood what was going on. This will allow me to be collaborative with my treatment efforts now and in the future. I have a copy of every single visit summary, CBC, biopsy, imaging test - any piece of this 1 million-piece puzzle so that should if some day there's a need to shine a light on a new aspect, I've got it to begin the studying all over again if needed!
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6 ReactionsJust read your post wow are we 2 peas in a pod and how I feel with you test after test and the famous "your fine there is nothing wrong with you " if you need to talk. I offer you bc I have recently been loosing my eye site I can talk n text it seems like we have a lot in common 😉
My last post was to rearent1
Hi Margaret, you'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.
However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
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1 ReactionI have RA it was diagnosed with imaging and contrast when blood markers did not show . By the time i was diagnosed it had spread throughout my body. Note: inflammation is symmetric , i also had rashes. was given steroids for pain and inflammation prior to the biologic infusions i now take. Good Luck…prayers of healing
Have you checked your symptoms with those of Polymyalgia Rheumatica? Mine began after my Covid vaccine.
Is the Beta Alinine a powder? If so how do you measure 750 mg? Thanks for your suggestion. I'll try anything for my eczema at this point.
Here is a link to the Beta Alanine that I take:
https://www.amazon.com/NOW-Sports-Beta-Alanine-750mg-Capsules/dp/B001AWSR34
You can also buy it in powder form that mixes with water but I prefer the capsules...
Good Luck, it is worth a try for only $17...I hope it works for you!!
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1 ReactionLexprobiotic — Keep trying to get a diagnosis; don’t get discouraged. Get a new doctor.
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