Undiagnosed Autoimmune Disease - No one will listen to me

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

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.

I tried Naltrexone a few years back (Not for Long Covid) and I had side effects from it and had to come off. It worked great for a while. I wish I could have stayed on it. It helped greatly with inflammation and pain and I was put on it for Hashitmotos (Hypothyroidism). I wish you the best with it! Blessing....

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.

suetex, Yes. I was having peripheral neuropathy symptoms in my arms & legs....especially when sleeping. My primary was not aware that I had been put on Naltrexone by my Endocrinologist. When I went to see my primary physician for the symptoms he asked if I was on any new medication. I told him about the Naltrexone. He wasn't familiar with Naltrexone and looked it up on his ipad. He told me to get off the drug immediately. Two of the side effects were migraines (which I already suffered from) and peripheral neuropathy. I will add, that my B12 was low and that can also cause peripheral neuropathy symptoms. I came off the Naltrexone and got B12 injections and the peripheral neuropathy symptoms went away in 2 weeks and for that i am grateful. I have to say I have had low B12 again (I am presently on B12 injections) and did NOT have peripheral neuropathy symptoms at all this time. I cannot be 100% sure that it was all Naltrexone, but, I have a gut feeling it was. I hope it works for you. Blessings.....

My wife has autoimmune disease (Sjogrens, Hashimotos and Lupus). Her PCP saw symptoms like dry eyes, dry mouth and enlarged glands (did an xray and determined her salivary glands were enlarged). Also did bloodwork and found high C-reactive protein and SED rate. She was referred to a rheumatologist. Long story short, she had years of temporary flare-ups until December of 2022. Then she had terrible inflammatory pain in groin, legs, arms and shoulders. Her rheumy tried one round of steroids, which didn't work. She went through 7 images (CT-scans, MRI and bone scans. She saw an emergency room doctor, orthopedic surgeon, neurologist and pain management doctor with no relief. Finally, her PCP (not the original one) said she was putting her on another steroid regime of 20mg prednisone per day and that worked. Hoping and praying you get some relief. God Bless

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.

My wife has autoimmune disease (Sjogrens, Hashimotos and Lupus). Her PCP saw symptoms like dry eyes, dry mouth and enlarged glands (did an xray and determined her salivary glands were enlarged). Also did bloodwork and found high C-reactive protein and SED rate. She was referred to a rheumatologist. Long story short, she had years of temporary flare-ups until December of 2022. Then she had terrible inflammatory pain in groin, legs, arms and shoulders. Her rheumy tried one round of steroids, which didn't work. She went through 7 images (CT-scans, MRI and bone scans. She saw an emergency room doctor, orthopedic surgeon, neurologist and pain management doctor with no relief. Finally, her PCP (not the original one) said she was putting her on another steroid regime of 20mg prednisone per day and that worked. Hoping and praying you get some relief. God Bless

I would see a good naturopathic doctor. They run more lab tests. I would eliminate wheat and dairy and sweets. Start with one and see if it makes any difference. Sometimes eliminating meat make a difference as well.

suetex, Yes. I was having peripheral neuropathy symptoms in my arms & legs....especially when sleeping. My primary was not aware that I had been put on Naltrexone by my Endocrinologist. When I went to see my primary physician for the symptoms he asked if I was on any new medication. I told him about the Naltrexone. He wasn't familiar with Naltrexone and looked it up on his ipad. He told me to get off the drug immediately. Two of the side effects were migraines (which I already suffered from) and peripheral neuropathy. I will add, that my B12 was low and that can also cause peripheral neuropathy symptoms. I came off the Naltrexone and got B12 injections and the peripheral neuropathy symptoms went away in 2 weeks and for that i am grateful. I have to say I have had low B12 again (I am presently on B12 injections) and did NOT have peripheral neuropathy symptoms at all this time. I cannot be 100% sure that it was all Naltrexone, but, I have a gut feeling it was. I hope it works for you. Blessings.....