Connect
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
That is really interesring. I have been through the same thing whereas I have symptoms just as you do with an addition of nerve pain. Bilateral carpal tunnel and many other nerve issues in neck, legs, arms etc. My doctors have tested for each issue separately and have given diagnoses such as neuropathy, arthritis, radicalopathy, and more...but if you take many of the issues/diagnoses and put them together they seem to fall under one diagnosis. For me I was thinking MS in my case...but they say no. For that I am happy...but I totally understand your point. I have even expressed to my doctors (and specialists) ..with all of these issues... it just seems like something is being looked over. And if not it seems like something is definitely brewing. They always act as if I am just having anxiety.
-
Like -
Helpful -
Hug
1 ReactionI thought Z pak was a five day antibiotic pack?
I had autoimmune markers in labs by neurologist who sent me to the most obnoxious rheumatologist who said I was fine and walked out. I was left sitting on the table with my feet actually turning blue from neuropathy and hanging over the table for so long! I asked to see another doctor in the practice and they said it wasn't allowed!!!
-
Like -
Helpful -
Hug
1 ReactionHave you had the test through a rheumatologist?
I have had it for years unaware but finally went to a rheumatologist and was diagnosed with auto immune and sjogrens.
I have 2 recommendations. Find a functional medicine provider in your area. They are trained in holistic medicine and really treat the whole person. They are much less likely to blow off your symptoms. They spend a lot of time with their patients. It may be something other than an autoimmune disorder, so be open to the process. The second is if you are able to get to the Mayo Clinic, and haven’t already done so, then call the main Mayo Clinic number and they’ll take it from there. Their consultative medicine group is amazing. Hope that helps.
I have autoimmune symptoms. I have watched my ana and rh rise over the last two years so that my ana is just over the line. This is common from talking to other patients. It can continue to creep or just flip all at once. Of course, I would rather that it not rise any further because I am suffering enough already. In the meantime, I am trying to reduce stress and get more sleep. Actually I hurt so much, I have to anyway. I can't imagine what it would be like if these markers flip at once. Don't worry about being viewed as anxious. It's not their body that hurts. I good example is sepsis. Seniors have worn out immune systems, so sepsis markers in the blood often take awhile to show up and when they do the patient is often in bad shape and headed for death. That is why so many seniors die of sepsis. I watched this in my husband that was in the hospital for a broken shoulder. He was in more pain than was appropriate for his injury, he was disoriented, very weak and could not stand or pee, running a low grade fever, he was clammy and looked like a dead fish and his hands and feet started to swell. The ER doc said it was probably just dementia. Of course I knew that he did not have dementia. The hospital staff kept trying to get me to put him in the nursing home. I prayed in the parking lot in my truck. When I walked back into the ER, a shaft of light from the hallway was shining through the glass door of his room showing a dark substance on his hand. When I looked, he had poop on his hand. He must have pooped in his bed and in his delirium reached around and touched it. I looked up his arm to see if there was any on his arm, and I saw a 3 inch scarlet disk where they had a previous intravenous catheter. I asked the nurse what it was, and could it possibly be an infection and she said she did not think so. I insisted that the ER doc see it. He came in 6 hours later and admitted it was an infection. The ER doc gave my husband intravenous antibiotics for a systemic infection that he acquired in the hospital. He was coherent within 12 hours and his other symptoms slowly receded over days and months. Why am I telling you this story? Because that and other situations as his caregiver have taught me never to doubt my instinct. Just because they have not identified the cause or given it a name does not make it unreal. That is also the day that I became absolutely sure that there is a God. I had been sitting in that room day and night and had not seen it because they kept the room dark and because I was fairly stupid. Always, always believe in yourself. There is far too much accusation of patients, especially female patients, of being hysterical, being hypochondriacs and having somatic tendencies. Get regularly testing and try to reduce stress. It is just the system we have to work with. It will take a long time before women are treated with greater respect
-
Like -
Helpful -
Hug
5 ReactionsIt's a 5 day course of gradually reducing Predisone, no antibiotics.
-
Like -
Helpful -
Hug
1 ReactionHow did the doctor diagnose you? I have elevated ANA but blood tests show no sjogrens
My RA doctor ran a in depth blood workup.
Found sjogrens and markers for multiple melanoma in my blood light chains.
ANA high could be RA.
I have autoimmune and my sister was diagnosed with sjogrens then lupus and then RA.
You need a good rheumatologist because primary doctors even internal medicine doctors do not know how to read the test results.
I now go to Moffitt Cancer Center every 6 months to check my light chains in my blood.
Where does one find a good rheumatologist on Long Island? I went to one and all blood work was fine except high ANA level