1. < Autoimmune Diseases

Undiagnosed Autoimmune Disease - No one will listen to me

Posted by katies0lvi3 @katies0lvi3, Jun 11, 2022

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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shirleynz | @shirleynz | Sep 26, 2022
In reply to @lexaprobiotic "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..." + (show)
@lexaprobiotic

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Jump to this post

Hiya. I sympathise with you. Here’s what I would do. I wouldn’t necessarily change doctors but I would have a one or two off consult with another - a specialist in overall health or a functional doctor or another that you think is good. Then I would change a few lifestyle things. I would change to AIP DIET but I would add in eggs. I wouldn’t do it half pie I would bang become an aip eater religiously. You will find inflammation goes and you are feeling more energetic very quickly. You body is saying ENOUGH at the mo so I know you need to change. I would drink lots of good water and go for a walk 3-4 times a week - just a short quiet walk. You will be stressed so do anything you can to take stress away. Meditation, naps, chatting to friends about other things not your health. Read, knit, make videos of yourself dancing. Draw out the inner you. Your body will start to love you again. Xx

REPLY
suzyq99 | @suzyq99 | Sep 26, 2022
In reply to @lexaprobiotic "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..." + (show)
@lexaprobiotic

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Jump to this post

I do not know if this would be helpful or not, but have you had your thyroid tested? hormones? Thyroid test TSH test can be done at Labs of hospitals, hopefully insurance cover, because it is a fairly routine type of test. I hope you have healing success soon. So frustrating when not listened to, and not finding help. I've heard (but don't know about it, just in passing) rheumatoid arthritis can be tough, heck all the stuff ya wrote about your situation sounds difficult. So sending virtual safe hugs your way! Also just a thought wonder if you have MS, multiple scoliosis? I'm dealing with VERY recent diagnosis of Graves disease autoimmune, I have sometimes seasonal allergies one year I was throwing up thought i had sinus infection or ??; and I have Lichen Planus, one doc. told me he did not think I had it EVEN though he is the same doctor that told me to go to dermatologist and that dermatologist sent him the diagnosis of biopsy lichen planus. I had light case by time saw that doc, but still 2yrs in row tried to figure out what is this skin thing. Turns out a relative of mine has the same skin thing, and her doctors had difficulty diagnosing it too. My dear a dear friend of mine told me that sometimes the doctors are 'practicing' medicine. Let that run thru your head, realize we are each human but some have more training and or brains then others and or experience and we're each here for some reason or another and doing usually the best we are able. Again Hugs and hope things get better sooon for ya!

REPLY
Mshutch | @mshutch | Sep 27, 2022
In reply to @lexaprobiotic "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..." + (show)
@lexaprobiotic

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Jump to this post

I started having symptoms of an autoimmune disorder in about 2006. I have reported symptoms over the years to my provider. My medical record says "psychosomatic". I decided about 6 years ago that I am not presenting with enough symptoms to convince anyone to do any testing or referral to specialists but one day that will change.
March of 2022 I went to my PCP and said that we have to do something about my hands. They are so painful. She said we will send you to the hand clinic again. Then.....she took the time to examine them and said "sausage fingers". She ordered a bunch of labs which came back positive for C.R.E.S.T. which is old terminology. She then ordered a rheumatology consult. I have systemic sclerosis, limited type.
As I have researched this it is apparent that many people with autoimmune disorders know it isn't just in our head. But it takes a long time to present with enough active symptoms to get others to believe.
My PCP started with a few inflammatory markers which resulted in the referral. Maybe you could start there.
(CRP) C-Reactive Protein level
(ANA) Antinuclear Ab, HEp-2 Substrate, S
Sedimentation rate.
I have also discovered that the University of Michigan in Ann Arbor has a great Rheumatology Department and a great website for patient education.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 1, 2022
In reply to @lexaprobiotic "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..." + (show)
@lexaprobiotic

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Jump to this post

@lexaprobiotic You sound like so many who are struggling with an undiagnosed autoimmune condition. Since you can’t diagnose yourself, start keeping a symptoms journal. Include every symptom, when it started and what triggered it. Anything you can think of.
Also, you might look into major medical centers or university/teaching hospitals in your state. They are more up-to-date with research and treating unusual cases.
There are good articles about why women are often ignored and what you can do about it. (I had one, but it doesn’t have a link, so I couldn’t put it on here. The best thing you can do is to advocate for yourself. Educate yourself and be prepared for every visit. I know you can do this!
Will you stay in touch with the group and let us know how you’re doing?

REPLY
1 reply
BeBold | @bebold | Oct 1, 2022
In reply to @lexaprobiotic "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..." + (show)
@lexaprobiotic

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Jump to this post

COVID and vaccines work by increasing the cytokine/bradykine level in your blood. It's how it creates immunity. How many of us have immune deficiency but taking flour and covid and other vaccines at once. Never take more than one vaccine at a time. Our bodies are struggling just to function in the face of other immune disorders never mind taxing it to where it won't fit any antibodies. Getting the shot doesn't guarantee antibodies. Drs say it's ok to take several vaccines at once. My cardiologist who is treating 12+ children a day with cardiac issues post covid, says at least a month between. Makes totally sense.

So ask to have your flammatory markers checked. Many of us with preexisting immune disorders are already living with adrenal Fatique. Where do you think the vaccines hit? It's a whole big messy system of checks and balances in our adrenal gland.

Many with covid are also finding an elevated histamine level which is known to cause itching and esp if an "anti-" histamine helps. There are histamine disorders that can be triggered. Best of luck.

And many of these things will fall under long haulers. I have lived with longhaulers- now on oxygen and looking at buying a wheelchair...for 2.5 years. I also have CRPS which is much worse after my second dose of covid. Nearly bed ridden for 5 weeks now.

REPLY
1 reply
dylynn | @dylynn | Oct 2, 2022
In reply to @becsbuddy "@lexaprobiotic You sound like so many who are struggling with an undiagnosed autoimmune condition. Since you..." + (show)
@becsbuddy

@lexaprobiotic You sound like so many who are struggling with an undiagnosed autoimmune condition. Since you can’t diagnose yourself, start keeping a symptoms journal. Include every symptom, when it started and what triggered it. Anything you can think of.
Also, you might look into major medical centers or university/teaching hospitals in your state. They are more up-to-date with research and treating unusual cases.
There are good articles about why women are often ignored and what you can do about it. (I had one, but it doesn’t have a link, so I couldn’t put it on here. The best thing you can do is to advocate for yourself. Educate yourself and be prepared for every visit. I know you can do this!
Will you stay in touch with the group and let us know how you’re doing?

Jump to this post

Hi
My name is Darcy
Feel like my story could piggyback yours
My symptoms in the last two years have morphed from Neuro, RA,
Ulcers in mouth
Root canals, itchy skin, lethargy, now Gastro
Again... Symptoms
1.5 years ago I was put on Short term disability at work
My symptoms were carpal tunnel like. When I asked the Dr if surgery would help, he said no. Even though it was being suggested. At that time I started a new path
I cut out all Alcohol and Pharmaceuticals. I went back to basics
How I was as a healthy kid before I chose unhealthy habits and made excuses for them all
Proper nutrition, excersize, sleep, and work
Prayer, fellowship with like minded people
Rest
Everything in moderation
Balance
I'm not there yet but have managed to get better. My blood work has improved w/ time
I journal everyday
People places and things
Lymph drain massage therapy was a key part of my recovery journey
Our central nervous system and connective tissue is key
Electrolytes
I'm a server in a restaurant
Just another person trying to survive

REPLY
Andrea A. | @austintraining | Oct 3, 2022
In reply to @lexaprobiotic "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..." + (show)
@lexaprobiotic

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Jump to this post

Hi
I’m so sorry you feel unheard and looked over. I have felt this too because doctors are so so so busy with overload patients.

May I ask where you have tried to be seen?

I have Skogrens with neuropathy associated and am trying different things but have not found true help yet.

REPLY
1 reply
zebra2022 | @zebra2022 | Oct 3, 2022
In reply to @lexaprobiotic "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..." + (show)
@lexaprobiotic

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Jump to this post

I also had issues beginning in 1995 when I was pregnant with my son. I developed dental issues. The doctors said it was a dental issue and the dentist didnt't do anything. I kept telling them that something wasnt right but neither listened. In 2005 I wound up losing my teeth because of the dental issues. In 2015 I was finally diagnose with sjogrens and it was the dry mouth that cuased the massive tooth decay. The issues went on for at least 20 before it was actually diagnosed. I was right the entire time that it was in fact a medical issue.

Now I have at least 4 confirmed autoimmune disorders and each time I kept telling the doctors and specialists something wasn't right none of them listened. Again I was right. It is extremely frustrating.

REPLY
donnasantella | @donnasantella | Oct 4, 2022
In reply to @austintraining "Hi I’m so sorry you feel unheard and looked over. I have felt this too because..." + (show)
@austintraining

Hi
I’m so sorry you feel unheard and looked over. I have felt this too because doctors are so so so busy with overload patients.

May I ask where you have tried to be seen?

I have Skogrens with neuropathy associated and am trying different things but have not found true help yet.

Jump to this post

UCH Health Systems Colorado wortthless .. Nobody listens..

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 4, 2022
In reply to @donnasantella "UCH Health Systems Colorado wortthless .. Nobody listens.." + (show)
@donnasantella

UCH Health Systems Colorado wortthless .. Nobody listens..

Jump to this post

@donnasantella. You sound like you’re very ‘down’ on UCH Health systems Colorado. Did you have a bad experience with a doctor or clinic or the whole hospital? Were you not listened to? Can you tell us?

REPLY
1 reply
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