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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kassi | @kassilevon | Jul 28, 2023
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

Hey, I am going through something very similar. Does your insurance allow you to self-refer to specialists? Also, tell your docs exactly which tests you want done and why. Some labs even let you order certain labs yourself. See a Registered Dietician. Eastern Medicine doc. Ideas- yes the MTHFR gene test, nutrition labs (I did ALCAT and Genova), Vitamin B and D levels especially (especially B12!), malabsorption labs, food and chemical sensitivity testing, Celiac, H pylori, endoscopy, colonoscopy, maybe an MRI of brain/spine, LP, EEG, sleep study… whatever else is on your mind. Follow your gut. And be open. But also don’t hesitate to get 20 second-opinions! And consider it all! And have a little patience before you decide on the treatment path you want to take. I know, patience 🤣🤣🤣, I’d let you slap me if you were here! But I’ve learned the wrong treatment is worse than no treatment sometimes. Go out of state. I know that’s easier said than done. My point is, someone will click with you and you will get progress!!! Power on! And when you can’t get out of bed, do you have someone who could schedule appts for you and put you in the car and take you? Maybe find a cheap or loaner walker or wheelchair and ask anyone to drag you to the doctor or to your counselor or whatever you need! This is where I’m at now, as much as I didn’t want to be-and it’s worth it. My family and friends need me to get better and so I try! And I want to leave a good legacy behind. You write your story, not doctors or bosses or anyone else. 🤗💗 Also look and see what research studies are going on, you just might qualify to join one! Seriously! Doing so greatly helped me and found me a doctor that was interested in me specifically! It’s an easy Google search. Go through legit places of course. I am working with the University of Colorado. 😉 There’s tons of studies out there! They usually help with travel plans and costs even! And you can help others at the same time!

REPLY
1 reply
kassi | @kassilevon | Jul 28, 2023
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

Just chimin’ in- My docs and I have even gone back and looked at old tests for the third, fourth time, and found something new! Also, different docs are used to certain imaging, so repeat tests through different facilities may help docs understand better!

REPLY
raepent1 | @raepent1 | Jul 29, 2023
In reply to @margaretsousa7205 "Just read your post wow are we 2 peas in a pod and how I feel..." + (show)
@margaretsousa7205

Just 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 😉

Jump to this post

Hi @margaretsousa7205 ! I was stumbling through some old posts trying to find something & I apologize I completely missed this outstretched hand! I would love to connect with you to hear more on your story! Feel free to send me a private message so we can catch up! Sending the power of positivity your way!

REPLY
ead | @ead | Jul 29, 2023
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

Just diagnosed with Rhumatiod Arthritis Interstitial
Lung Disease. What has helped? Any information that helps me cope?

REPLY
amberashlee1993 | @amberashlee1993 | Jan 19 11:34pm

I am going threw the same issues exact same. Except the doctors only ran blood test and an xray on lower back and said it's somewhat straight spine and have an appointment with an oncologist the end of january.... If you find out anything more,please let me know. I wish you the best ❤️

REPLY
suetex | @suetex | Jan 20 4:14pm
In reply to @kassilevon "Hey, I am going through something very similar. Does your insurance allow you to self-refer to..." + (show)
@kassilevon

Hey, I am going through something very similar. Does your insurance allow you to self-refer to specialists? Also, tell your docs exactly which tests you want done and why. Some labs even let you order certain labs yourself. See a Registered Dietician. Eastern Medicine doc. Ideas- yes the MTHFR gene test, nutrition labs (I did ALCAT and Genova), Vitamin B and D levels especially (especially B12!), malabsorption labs, food and chemical sensitivity testing, Celiac, H pylori, endoscopy, colonoscopy, maybe an MRI of brain/spine, LP, EEG, sleep study… whatever else is on your mind. Follow your gut. And be open. But also don’t hesitate to get 20 second-opinions! And consider it all! And have a little patience before you decide on the treatment path you want to take. I know, patience 🤣🤣🤣, I’d let you slap me if you were here! But I’ve learned the wrong treatment is worse than no treatment sometimes. Go out of state. I know that’s easier said than done. My point is, someone will click with you and you will get progress!!! Power on! And when you can’t get out of bed, do you have someone who could schedule appts for you and put you in the car and take you? Maybe find a cheap or loaner walker or wheelchair and ask anyone to drag you to the doctor or to your counselor or whatever you need! This is where I’m at now, as much as I didn’t want to be-and it’s worth it. My family and friends need me to get better and so I try! And I want to leave a good legacy behind. You write your story, not doctors or bosses or anyone else. 🤗💗 Also look and see what research studies are going on, you just might qualify to join one! Seriously! Doing so greatly helped me and found me a doctor that was interested in me specifically! It’s an easy Google search. Go through legit places of course. I am working with the University of Colorado. 😉 There’s tons of studies out there! They usually help with travel plans and costs even! And you can help others at the same time!

Jump to this post

Your attitude and approach is inspirational. Thank you for sharing!

REPLY
karlm | @karlm | Jan 21 8:59pm

Have you been tested for Lyme disease.?

REPLY
oldkarl | @oldkarl | Jan 22 11:11am

katies0lvi3 (@katies0lvi3) HEY, Friend... You sound like me. I just found out what I have, after struggling with it for 84 years. No doctor would listen to me until this year. Every one said they thought I had something, but no one would order a DNA test until now. And now I am hearing the truth. LGMD-R23, Bone Cancer in most of the bones in my body (ribs, legs, arms, skull, teeth, hands, hips, shoulders, etc.), Diabetes 2, Chronic heart disease (at one time I had 23 stents), soft tissue cancers (kidneys, esophagus, stomach, gallbladder, prostate, thyroid, eyes, etc). But I have lived a good life. Three College degrees, 20 books, 2 heart bypasses, football for 50 years (playing, coaching, officiating), visited 48 states, half of Mexico and Canada, 50 years pastoral ministry, 10 grandchildren, 25 great-grandchildren, including about 1/3 of family with military experience. You can do all this and more. What you must do is just commit to doing what you want, and shove the health issues to the side. The only person you will hurt is any doctor who will not listen. They will hurt in the paycheck. oldkarl

REPLY
1 reply
inminn | @inminn | Jan 23 9:18am

Good luck to you! In such complex cases such as yours, the best ally to have is a clever specialist who knows how to use code in order to get the insurance companies to approve what you most need. All of this must really become frustrating, stay positive!

REPLY
inminn | @inminn | Jan 23 9:53am
In reply to @oldkarl "katies0lvi3 (@katies0lvi3) HEY, Friend... You sound like me. I just found out what I have, after..." + (show)
@oldkarl

katies0lvi3 (@katies0lvi3) HEY, Friend... You sound like me. I just found out what I have, after struggling with it for 84 years. No doctor would listen to me until this year. Every one said they thought I had something, but no one would order a DNA test until now. And now I am hearing the truth. LGMD-R23, Bone Cancer in most of the bones in my body (ribs, legs, arms, skull, teeth, hands, hips, shoulders, etc.), Diabetes 2, Chronic heart disease (at one time I had 23 stents), soft tissue cancers (kidneys, esophagus, stomach, gallbladder, prostate, thyroid, eyes, etc). But I have lived a good life. Three College degrees, 20 books, 2 heart bypasses, football for 50 years (playing, coaching, officiating), visited 48 states, half of Mexico and Canada, 50 years pastoral ministry, 10 grandchildren, 25 great-grandchildren, including about 1/3 of family with military experience. You can do all this and more. What you must do is just commit to doing what you want, and shove the health issues to the side. The only person you will hurt is any doctor who will not listen. They will hurt in the paycheck. oldkarl

Jump to this post

OldKarl, God bless your positive attitude despite your long journey to the truth!
Your words rang true for me. Like most with a chronic mystery condition, I’ve been focused overmuch on the mystery and have spent too many years mourning the loss of my previous lifestyle and abilities. Although it has felt hopeless at times, I know at heart that there is much still to be grateful for and in which to find joy.
Thank you!

I recently sent in a 23andMe health product hoping it will reveal something useful.

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