Can I have an autoimmune disease with perfect lab results?

Posted by millyg6 @millyg6, May 20, 2023

I have been suffering with different pains for 5 years and I’m currently 18. It started with pains in my chest and back after I got sick for about a week. My doctor said they didn’t know what it was and that it was most likely just a weird symptom from a normal cold. A couple months later the same thing happened with less pain in my back and more in my chest. I went to the doctor again and they said that it only hurt because I had a sleepover the weekend before. Every few months I would be in extreme pain that would keep me in bed for about a week then it would go back to normal. After happening a few times my doctor finally did some blood test but my blood work came back perfectly normal so the doctor sent me home with no answer. After 3 years of mysterious flare ups of pain, the worst one happened. It started with my chest but I then got rashes all down my legs and arms, as well as redness on mostly one side of my face that was extremely hot even though I had no fever. My joints were also really hurting (it felt like really bad growing pain) mostly in my ankles and legs. This time the pain lasted for about a month and if I got out of bed to eat or do something I would end up on the floor crying in pain. This is when we finally forced the doctor to give us a referral to some more doctors. I then saw pulmonary, gastrointestinal, dermatology, physical therapist, and rheumatologist who all did tests (or looked at my previous blood work) and said I was perfectly fine. My mom and I found autoimmune disease and I saw that cutting out gluten is the first step for autoimmune disease so that’s what I did. It has now been 2 years without gluten and I feel a lot better. I no longer have weeks spent with chest pain. I do get flare ups still but they are much better. I will get the rashes and a little bit of chest pain but not the same as it was. I do feel better than before but I am still suffering with pain and fatigue without any diagnosis and the doctors telling me I’m perfectly fine. Is it possible to have an autoimmune disease with perfect lab results? Or if anyone has any suggestions on how to move forward I would very much love to hear. Thank you!

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@deysi

Hola.
Parece que me escuchara a mi hace años.
Revisa el Cortisol...yo lo tenía bajito ,casi nulo y aun así mis laboratorios salían perfectos. Hoy en día tengo la enfermedad de Addison y Hashimoto.

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Thank you for that suggestion!

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@lisalisa

The geneticist appt is still about 8 weeks away. We did recently see the Neurologist that prescribed the Epi pen recently and a new antihistamine and steroid medication was added. She has been 10 days without a rash. This is a marked improvement.

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@lisalisa I am so happy to hear that your daughter hasn’t had a rash. Just stay on top of symptoms and get help when needed!

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I just recently got all my labs back from my new rheumatologist and was supprised at my "normality" Sed rate, CRP, ANA all negative. It has been years one or more have been positive. But she also did a Sjoegrens test and that was positive. (Really no surprise.) But here is the real surprise: For 2 years I have had weight bearing balance problems and loss of leg strength that has stumped numerous docs. She suggested small fiber neuropathy and there is a genetic association with Sjoegren's. (Usually it is caused by type 2 diabetes which is rampant here.) But I have no tingling or numbness, just balance problems. My feet and/or legs don't know where I am. So, my question is anyone here had such a diagnosis of small fiber neuropathy?

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@becsbuddy

@lisalisa I am so happy to hear that your daughter hasn’t had a rash. Just stay on top of symptoms and get help when needed!

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Thank you! @becsbuddy

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I have fibromylgia, chronic fatigue, pain in joints, allergies, constant sneezing running nose, now diagnosed with lichen sclerosus and perfect blood work. Strange

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