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DiscussionUndiagnosed Autoimmune Disease - No one will listen to me
Autoimmune Diseases | Last Active: Jan 24 3:56pm | Replies (173)Comment receiving replies
Replies to "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..."
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.
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
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
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.....
Our rheumy was very, very reluctant to give a diagnosis of PMR because, as she said, the first round of prednisone (6 day medipak} did not work well. After all the images and different doctors, she has finally determined it is PMR. We are just grateful our, PCP, tried a daily dose of prednisone.
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.
Hi. I'm so sorry to hear your suffering like this. I am 50 and have been dealing with this since I was 32. All of what you said but threw the years things have gotten worse by far. So I would say don't stop becuz finally now docters fear I have ulcerative colitis which untreated all that time means I could be in serious trouble bc it's an auto immune. Which I've known like u that your problem is auto immune. So my advice is keep going to every specialist you can until something is found don't ignore it or any symptoms. Keep a log!! Good luck!!!!
You and they are right, technically it could be anything. However, all of these symptoms can be caused by hypothyroidism. And of course an often goes undiagnosed or ignored in women especially older women. I would go to an endocrinologist and have lab tests done correctly, and make sure it's someone who's willing to test out a low dose of thyroid hormone.
I also suggest as previously recommended to see a naturopath or a functional medicine doctor. They do run more tests and look at causes of your symptoms. After taking prescription meds that did more harm than good for me, I gave up on my health providers. There can be many reasons why you’re feeling they way you do. I found my functional medicine doctor by googling in my area. You can search for one on the website by city and state at ifm.org. Wishing you the best in finding an answer.
I am going through the same thing. It is extremely frustrating. My life revolves around when my next flare up is going to happen.