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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@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.

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Blessings all!😇🙏🌈

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@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.

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So sorry to say I’ve had same symptoms Andy no doctors who gets it!
I’m going to try another neurologist- last one just had me look up and down etc. and said”no problem”
I know it’s related to COVID ax alerting my immune system!
Keep trying. Good luck!😇

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@becsbuddy

@carsoncreek Your poor daughter. How frustrating to feel awful and get no answers. There are so many autoimmune diseases now and many of them are new. If Mayo Clinic is still difficult to get into, you can try university hospital or the Mayo Clinic Care Network:
https://mayoclinic.org/about-mayo-clinic/care-networks/members
Another good link for Mayo appointments:
https://mayoclinic/1mtmR63
Will you stay in touch and let me know how everything is going?

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Has she been tested for Lyme Disease? Sadly Lyme Disease doesn’t always show up in the standard blood test they use to check for it. The joint issue you mentioned made me think of Lyme. I had Lyme and every joint in my entire body hurt. It got to where I couldn’t hardly get up off the sofa. A rheumatologist tested me for Lyme and I only had one marker. I researched Lyme and I knew that is what I had. I contacted my general practitioner and she started me on the medication for Lyme. By day 5-6 my joint pain started to go away. Most people never know they have had a tick bite. I had a bite but never got the bullseye rash. Not everyone does. Our family had a place in Wisconsin near a lake, one of my nieces and her daughter both suffer from long term Lyme. If you feel she may have Lyme please find a Lyme literate doctor.

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@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 contracted Covid at the very beginning of the pandemic. Former personal trainer, zero pre-existing conditions. Convinced Covid has changed my blood vessels. In the two years since I have suffered from severe fatigue- slowly abating- and a host of other conditions. All of the ones you mentioned and more. The numbness stopped 6 months in, the severe itchiness has not gone away. Lymph nodes are back to normal etc. Forget Lyme disease, you were bitten weeks after. I’m now two years out and I’m mostly back to normal. Fatigue has improved 80%, I can exercise at a similar level. Don’t get discouraged with Dr.s and all tests revealing squat. Covid has affected us at a cellular level and these weird manifestations are just the response. Try and stay positive and keep putting one foot in front of the other while eating well, keeping a sleep schedule and move your body every day as best you can. Eventually the scientists will tell us why we all suffered these bizarre side effects and what might be done to rid us of them for good.

Take good care.

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@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

Sorry for your problems. Has your family/general doctor ordered the basic blood tests for inflammation and if so, did they show anything? Have you ever had a Prednisone Z Pac ordered; did it help?

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@richardab

Sorry for your problems. Has your family/general doctor ordered the basic blood tests for inflammation and if so, did they show anything? Have you ever had a Prednisone Z Pac ordered; did it help?

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What is prednisone a pac. I know the Z stands for azithromycin and the Z pac was the 5 day course treatment in one package . Prednisone taper pack goes by another name. Do you happen to know what the tapering dose is over 7 or 10 days?

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@mom2204

What is prednisone a pac. I know the Z stands for azithromycin and the Z pac was the 5 day course treatment in one package . Prednisone taper pack goes by another name. Do you happen to know what the tapering dose is over 7 or 10 days?

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Sorry, I just know the Z Pac is a 5 day treatment. Tapering depends on what dosage you're starting with.

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@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 just happened to peak in today, not really expecting anything. But when i heard prednizone, wow! That is my experience too! The difference is that my specialist told be to give it a try. I felt like a humannagain for 3 days. That was when he said you have an idiopathic autoimmune disorder. Sadly in stated crawling the walls, so i had to stop. And once again i am on steroids to treat bronchitis following covid. I am not well, but in still feel like a human again. The issue is that this information never gets discussed among my variety of specialists, or it. Gets poo poo ed. I realized this week that im have been hiring carpenters all this time, and they auto see the solution as a hammer and a nail. But over 35 years now, i just get sicker and sicker. I gotta find me a general contractor!

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@bee22

If left untreated- Lyme can turn into immobility for some.....and painful arthritis.Also did you get tested for Lupus.Both Lyme or Lupus comes with a rash usually!

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No doctor has mentioned psoriatic arthritis, lupus or anything. Go from Dr to Dr and am dismissed. Wish my old veterinarian were alive

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@3pelican

I just happened to peak in today, not really expecting anything. But when i heard prednizone, wow! That is my experience too! The difference is that my specialist told be to give it a try. I felt like a humannagain for 3 days. That was when he said you have an idiopathic autoimmune disorder. Sadly in stated crawling the walls, so i had to stop. And once again i am on steroids to treat bronchitis following covid. I am not well, but in still feel like a human again. The issue is that this information never gets discussed among my variety of specialists, or it. Gets poo poo ed. I realized this week that im have been hiring carpenters all this time, and they auto see the solution as a hammer and a nail. But over 35 years now, i just get sicker and sicker. I gotta find me a general contractor!

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@3pelican -
Interesting- I had the same experience with Prednisone when I was seeing GI at Mayo for a GI disorder- not yet diagnosed as autoimmune.
I was on prednisone occasionally for asthma, bronchitis etc. I also felt normal for a few days- even losing several lbs water weight.

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