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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Were you ever tested for Lyme disease?

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There is a special lab in CA that specifically targets lupus labs. I came across this post but I'm upstairs in bed now. My regular labs show .1 higher than the high on ONE lupus test! Lab said "no way lupus". Sent to specialty lab and came back Tier 1 SLE strongly positive. I don't trust the local labs nor the radiologists where I live. They're a nightmare. Keep searching. If that pic was you you certainly have the lupus butterfly rash.
Good luck!

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@jodiemc

I have an appointment this Thursday, had to wait 3 weeks

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@jodiemc. How did your appointment go? Did you learn anything or get a treatment plan?

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Every test has the possibility of false negatives and false positives. Your physicians cannot treat you until they have a diagnosis. Until they know what’s going on, based on your symptoms and test results, any treatment or medications would potentially do more harm than good, since the treatment would likely be focused on an illness you don’t have, and leave untreated the illness you actually have. Also, please remember that health insurance will not pay for treatment or medication unless there’s an official diagnosis. It sounds like your physicians are as mystified as you are. My recommendation to you is to focus on things you can control. Drink lots of water, avoid “white” foods like sugar, bleached flour, pasta, and rice. Increase your consumption of fresh and/or frozen foods. Eliminate meat from your diet. Increase your exercise to 30+ minutes daily, swim or join a yoga class at your local YMCA. Volunteer at your local animal shelter 1+ days per week. Remain grateful you haven’t started treatment for a disease you don’t have and remain confident an answer will eventually be found

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My daughter has had these sudden red heat rashes come and go for several years. We have never known what triggered them… EPI pens have had to be used in the past 4 months, as they have been progressing and increasing in frequency. Neurologist felt it was MAST cell activation as well, and referred us to Genetics testing and allergy.
Her labs are always “good” ANA’s wax and wane…. I understand your frustration.

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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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@lisalisa

My daughter has had these sudden red heat rashes come and go for several years. We have never known what triggered them… EPI pens have had to be used in the past 4 months, as they have been progressing and increasing in frequency. Neurologist felt it was MAST cell activation as well, and referred us to Genetics testing and allergy.
Her labs are always “good” ANA’s wax and wane…. I understand your frustration.

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@lisalisa Have you been able to take your daughter to a geneticist? And have you learned anything? Your daughter’s symptoms seem to be increasing and you’ve been using an EPI pen.
Frequent use of an EPI pen could signal a progression of a disease.
Has she been back to the doctor who prescribed the EPI pen?

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Looks like a classic butterfly rash found in Lupus if ever I saw one. Did you show the rheumatologist that photo of you?

I don’t have Lupus but I remained seronegative for Sjögrens Syndrome for eight years after getting ill. Fortunately the specialist doctors that I had treated me for the many individual debilitating symptoms I had which made life much more bearable. Then after eight years in 2015, finally my ANA’s and other markers were positive.

So yes, it is possible to have an autoimmune condition and for your blood testing to be negative.

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@becsbuddy

@lisalisa Have you been able to take your daughter to a geneticist? And have you learned anything? Your daughter’s symptoms seem to be increasing and you’ve been using an EPI pen.
Frequent use of an EPI pen could signal a progression of a disease.
Has she been back to the doctor who prescribed the EPI pen?

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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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