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!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@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

God Bless You! I have fibromyalgia, both thyroid diseases & osteoarthritis all over. Covid flared all of that up. I went to a pain clinic recently and was told that in fact I was in a flare up due to long Covid. I am going to a Long Hauler Covid Clinic soon. I have been to several doctors myself and it's so frustrating.
This one really listened. See if you can get a referral into a pain clinic for an evaluation. Also, I agree, mast cell issues/histamine issues could be causing this for you since the antihistamines help. Covid (even a mild case) can cause issues with some people on down the road and not with others.

REPLY
@freebird195

I had a mild case of OA in both thumb joints. Then, I turned my ankle ever so slightly, that I kept on going. When I sat down that night I saw my ankle was very swollen. I did the ice, heat ***etc. I went to my doctor (oops 1 of his PA's that are crazier than batshit. She felt around with her fingers and said I had a sprain or a strain. And, continue what I was doing. No relief. I saw 5 different doctors in 1 year. I couldn't even think of going to the grocery store, especially Costco. I finally read about a local doctor who does ankle replacements. I knew I didn't need that, bit I figured he knew feet really well. I went to him and he ordered an MRI, he was the 1st doctor out of 5 that ordered an MRI. I had the MRI and the radiologist wrote the wrong report. Dr. Clancy, looked at the MRI's himself and saw that 1 tendon going down from my ankle was torn (there are 3) and my foot was totally unstable. He did arthroscopic surgery to reattach the tendon and cleaned out some debris, that I assume were by products of cartilage. The weird thing is that I got severe arthritis pain in BOTH feet, which I never had before. Then, I got arthritis in both feet. When I mentioned it to him, he said it's bilateral. If you have it in 1 foot, you'll get in the other. The operation on a joint can do that. He gave me cortisone shots in both feet and luckily I got home before that kicked in, bc I couldn't put any weight on my feet bc the crystals were too big to go into where ever they were supposed to go. The next morning I was pain free.
I was not vaccinated for C19. My son & his wife got 2 shots of PFIZER in April 2020. I was sheltering in a beautiful place with my 2 dogs and I caught C19 from my son (who has no children and probably never will) who had the 1st break through case I've heard of. My case was very mild, bc I had a phone consultation with Dr. Zev Zelanko and he told me that I should take the HCQ + Z pack +zinc, vitamins C & D3, then Quercentin bc the Jab would make my arthritis worse. The medicine was at my local pharmacy the next morning. But, slowly my arthritis is worse than ever. Dr. Z died of the rarest form of cancer-tumors in his heart.
Any input would be greatly appreciated.

Jump to this post

No words, if it helps we are all In the same boat.
Get shipped down the road.

REPLY
@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 hear you and I'm listening. Like you, my journey began with unknown causes for serious symptoms. Over the course of two years my case was seen by eight neurologists. The first one suspected Cidp but her speciality was orthopedics. It took several months to been seen by a neurologist that did diagnose. Following another year of progressive worsening symptoms and countless tests I began receiving treatment last November. I am responding. My encouragement for you is to press hard for a neurologist, immunologist and or endocrinologist and seek blood work. Don't take no for an answer. Don't stop. I can only speak for myself. The process from first symptoms to treatment took time and I became more affected every month. I was discouraged and tempted to give up. Don't. Your story can be heard by those who can help you. Press forward friend.

REPLY
@freebird195

I had a mild case of OA in both thumb joints. Then, I turned my ankle ever so slightly, that I kept on going. When I sat down that night I saw my ankle was very swollen. I did the ice, heat ***etc. I went to my doctor (oops 1 of his PA's that are crazier than batshit. She felt around with her fingers and said I had a sprain or a strain. And, continue what I was doing. No relief. I saw 5 different doctors in 1 year. I couldn't even think of going to the grocery store, especially Costco. I finally read about a local doctor who does ankle replacements. I knew I didn't need that, bit I figured he knew feet really well. I went to him and he ordered an MRI, he was the 1st doctor out of 5 that ordered an MRI. I had the MRI and the radiologist wrote the wrong report. Dr. Clancy, looked at the MRI's himself and saw that 1 tendon going down from my ankle was torn (there are 3) and my foot was totally unstable. He did arthroscopic surgery to reattach the tendon and cleaned out some debris, that I assume were by products of cartilage. The weird thing is that I got severe arthritis pain in BOTH feet, which I never had before. Then, I got arthritis in both feet. When I mentioned it to him, he said it's bilateral. If you have it in 1 foot, you'll get in the other. The operation on a joint can do that. He gave me cortisone shots in both feet and luckily I got home before that kicked in, bc I couldn't put any weight on my feet bc the crystals were too big to go into where ever they were supposed to go. The next morning I was pain free.
I was not vaccinated for C19. My son & his wife got 2 shots of PFIZER in April 2020. I was sheltering in a beautiful place with my 2 dogs and I caught C19 from my son (who has no children and probably never will) who had the 1st break through case I've heard of. My case was very mild, bc I had a phone consultation with Dr. Zev Zelanko and he told me that I should take the HCQ + Z pack +zinc, vitamins C & D3, then Quercentin bc the Jab would make my arthritis worse. The medicine was at my local pharmacy the next morning. But, slowly my arthritis is worse than ever. Dr. Z died of the rarest form of cancer-tumors in his heart.
Any input would be greatly appreciated.

Jump to this post

@freebird195 It sounds like you have a lot going on and really need to right kind of doctor to help you. Have you asked your PCP for a referral to a rheumatologist. They are the ones to ask about painful joints. Here is a link to the group on rheumatoid arthritis:
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
Start a journal and write down all your symptoms (from the start) and questions that you have. Take this to the doctor when you go.
Can you ask for a referral? I’d really like to know what you find out

REPLY
@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 suffer from undiagnosed auto immune diseases.
Mine are consistent with MS and Reynauds and myesthenia gravies.
I’ve been searching for relief or treatment for 9 years.
To no avail.
Hang in there.
Be your own best advocate.

REPLY
@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

Im looking into lyme causing mine. labcorp neg, but quest gave me positive bands 58 and 93.

REPLY
@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 am going through the same thing. It is extremely frustrating. My life revolves around when my next flare up is going to happen.

REPLY
@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 have the positive ANA and several of those symptoms and when I tried going off gluten my tiredness and joint pain went away. I'm now being tested for celiac disease. I don't know what I'll do next if that's not the answer. Doctors don't seem concerned but I've been dealing with the numbness, itchy skin and hives for the past 10 years without answers and now the joint pain and tiredness make sitting at my desk and working everyday almost impossible. I can't afford to stop working. I would remove gluten from your diet for 1 month and see if that helps any. I've had to eat gluten for a month to do the testing, but will go off it again after the tests even if they're negative for celiac because it improved my worst symptoms. Taking Claritin every day helps the hives and the leftover itchiness is manageable. I don't do some things as much because of the numbness but it's not debilitating.

REPLY
@dianas82

I have the positive ANA and several of those symptoms and when I tried going off gluten my tiredness and joint pain went away. I'm now being tested for celiac disease. I don't know what I'll do next if that's not the answer. Doctors don't seem concerned but I've been dealing with the numbness, itchy skin and hives for the past 10 years without answers and now the joint pain and tiredness make sitting at my desk and working everyday almost impossible. I can't afford to stop working. I would remove gluten from your diet for 1 month and see if that helps any. I've had to eat gluten for a month to do the testing, but will go off it again after the tests even if they're negative for celiac because it improved my worst symptoms. Taking Claritin every day helps the hives and the leftover itchiness is manageable. I don't do some things as much because of the numbness but it's not debilitating.

Jump to this post

Fourteen years ago I went to a rheumatologist because of inflammation in my hands after getting H1N1. He was going to put me on a spate of medicines. I went off gluten to see if that helped; my GI problems cleared in a few days, my hands in one months and my skin rashes in ~8 months. So I didn't do the meds. Even if you have a negative celiac test(s), you can still have that or food(s) intolerance. My tests were all negative (mostly because the GI screwed up), but I do have celiac. I also have numbness from MGUS neuropathy. If you haven't tried an elimination diet to see if you have other food sensitivities, it is good to try, and keep a food log.

REPLY
@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

To Covidstinks2023: (Love your handle) They are trying Low Dose Naltrexone as a treatment for Long Covid now. Since it helps the immune system, and side effects are slight, so worth a try

REPLY
Please sign in or register to post a reply.