Undiagnosed Autoimmune Disease - No one will listen to me

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.....

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.

Unfortunately the broad effects of B12 deficiency is not well understood in the medical profession. Part of the reason is that a better understanding of B12 absorption process has only become developed in the last 5 years. Add to that the recently understanding that the absorption process declines with age and the result is rampant under diagnosed and under treated B12 deficiencies.
My own treatment experience with B12D has ranged from monthly injections of 1 cc of B12 starting about 15 years ago to the precent 0.5 cc injections every 5 days! The increases in injections was necessitated as my symptoms evolved from Anemia/Fatigue in the beginning to short term memory and balance issues
recently.
Because my B12D was triggered by Celiac Disease gut damage my B12D adsorption problems were more widespread that just the symptoms listed above and the B12 injections have helped significantly in managing them in part because B12 is a powerful anti-infamatory!
Chris47 -

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.

Hi , Did you see an Endocrinologist? I have Hashimoto disease, thyroid underactive disease and all your symptoms are on the list. I take Levothyroxine 75 mcg, which has helped.

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 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 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 was born with migraines but manage to control them later in life and the LDN did not trigger them. I'm sorry you are one of the unlucky few. It seems to bear lots of promise to those of us with unruly immune systems Best of luck...

HI, LDN is also used to treat many chronic pain conditions. I have CRPS 2 neuropathy from abuse. LDN did not help me. It helped my granddaughter. She was on high opiates that stopped working. LDN has got her pain under control at 4.5. I had a strange autoimmune disease hit me when I had my second spinal cord stimulator implanted. My liver enzymes went up. I had every liver test known. I don't drink and I started a healthy Keto diet. They are almost normal now. I eliminate racing/junk thought. I do my best to live in the present moment. Keep positive thoughts that everything is fine. Not so easy to do, but the diet change and brain change help. I have been on Levothyroxine for 23 years. I was on the brand Synthroid and thought it was better than the generic. The co pay is out of control now. I will keep positive thoughts for you and everyone. Can't go wrong with that. I use Ketamine to beat my pain. I have a friend with severe Migraines several times a month. He uses the Ketamine nasal spray. He has relief in 2 minutes. He does stay in the dark for a few hours. At work we massage his neck, head, and face gentle. I feel the horrid tension he has. No clue to the cause. He can feel it coming on. I do not drive until it wears off. That is just me and might not affect someone else. Ketamine is also used in lower doses for depression.