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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My former wife had Lupus, in the early '80s when not much was known about it. I agree with ladyaceintx1, that rash does look suspiciously like the facial butterfly rash of lupus and other symptoms match hers. The first step is to get a antinuclear antibody (ANA) test to see if your body might make Lupus antibodies. Then there are more specific antibody tests for the disease. Best of luck in getting the correct diagnosis. A rheumatologist or your general physician can order the ANA test.

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Hi there 'milly',
It is a huge challenge to deal with these issues of 'what's wrong with me; why do I hurt; surely something will give me answers'... but you are dealing with this through your teen years! You are amazing! Congratulations on your direction and efforts on attacking this.
A long time ago, in the '70's, a doctor said to me that I was the patient and I had an important job to do.. I was responsible to do my own research and find what helps me. Diagnosis or not, I was the one doing the living. Find information, find excellent medical help, and most of all find support !
These were wise words.
If I lived in the States, I would try a Mayo Clinic or a university medical group. For support you are using this online support group, but face to face groups are very important too.
You are doing well to be following what is helping. I am on the sidelines cheering you on! Keep that 'spunk' to push on in forming a solid base of skills, knowledge and support!

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You can have autoimmune
diseases with negative labs.
Some of the first line screening labs are not perfectly sensitive. Others may show positive when later retested, Some anti DNA tests are not always thought about.
A High sensitivity CRP would be worthwhile. Your doctors should have checked your HLA.
Document and log all of your
symptoms. Photos are helpful.
Collect and organize all of your lab studies and records.
Make sure your Physicians are communicating their consult
opinions and work with your
regular primary MD.
I would continue gluten restriction and study the anti-
inflammation diet.
It may help to be referred to Mayo or another tertiary University with all of your history if insurance covers your needs.
Don’t give up . Keeps active and be your own advocate.

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@seniormed

You can have autoimmune
diseases with negative labs.
Some of the first line screening labs are not perfectly sensitive. Others may show positive when later retested, Some anti DNA tests are not always thought about.
A High sensitivity CRP would be worthwhile. Your doctors should have checked your HLA.
Document and log all of your
symptoms. Photos are helpful.
Collect and organize all of your lab studies and records.
Make sure your Physicians are communicating their consult
opinions and work with your
regular primary MD.
I would continue gluten restriction and study the anti-
inflammation diet.
It may help to be referred to Mayo or another tertiary University with all of your history if insurance covers your needs.
Don’t give up . Keeps active and be your own advocate.

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Yes you can. I had Hashimotoes after having normal labs. Had small lump in thyroid after testing. Put on Synthroid and lump gone but on Synthroid for rest of life. My symptoms were bad fatigue then discomfort in neck. Make sure you see thyroid specialist

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Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles of my feet, tingling chills all over body and isolated areas, pain in neck and back of head, soreness around bottom of ribcage, sweats, tingling in hands and feet, irritable, blistering hives on ankles. I also have acid reflux/GERD and slight hearing loss in my left ear and fluid in my right ear. All my blood work is returning normal and brain scan clear. Has anyone had similar symptoms? Going crazy with worry and anxiety not knowing what is wrong. Thank you.

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Looks like Lupus. Go to a RA Dr. and get tested. Best wishes ❤️

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@jodiemc

Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles of my feet, tingling chills all over body and isolated areas, pain in neck and back of head, soreness around bottom of ribcage, sweats, tingling in hands and feet, irritable, blistering hives on ankles. I also have acid reflux/GERD and slight hearing loss in my left ear and fluid in my right ear. All my blood work is returning normal and brain scan clear. Has anyone had similar symptoms? Going crazy with worry and anxiety not knowing what is wrong. Thank you.

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Wow, you sure have your hands full. Other than doing a google search I don't know what to say but know this, I do wish you well

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@jodiemc

Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles of my feet, tingling chills all over body and isolated areas, pain in neck and back of head, soreness around bottom of ribcage, sweats, tingling in hands and feet, irritable, blistering hives on ankles. I also have acid reflux/GERD and slight hearing loss in my left ear and fluid in my right ear. All my blood work is returning normal and brain scan clear. Has anyone had similar symptoms? Going crazy with worry and anxiety not knowing what is wrong. Thank you.

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Have you had a Lyme Western Blot? The initial Lyme Elisa that screens and determines who gets a Western Blot can give false negatives. See if you can have a Western Blot directly.

It sounds like some of your symptoms are not connected to others. Is your cervical spine in neck okay? That can cause the tingling. Maybe seek an x-ray or MRI from neurologist or spine doc-?

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@jodiemc

Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles of my feet, tingling chills all over body and isolated areas, pain in neck and back of head, soreness around bottom of ribcage, sweats, tingling in hands and feet, irritable, blistering hives on ankles. I also have acid reflux/GERD and slight hearing loss in my left ear and fluid in my right ear. All my blood work is returning normal and brain scan clear. Has anyone had similar symptoms? Going crazy with worry and anxiety not knowing what is wrong. Thank you.

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Hello @jodiemc, I would like to add my welcome to Connect along with @casey1329, @windyshores and others. I know it's frustrating with all you have going on to not have any answers on what's causing the symptoms. I'm hoping members with similar symptoms may be able to share their experience.

Are you currently on any medications for other conditions?

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@jodiemc

Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles of my feet, tingling chills all over body and isolated areas, pain in neck and back of head, soreness around bottom of ribcage, sweats, tingling in hands and feet, irritable, blistering hives on ankles. I also have acid reflux/GERD and slight hearing loss in my left ear and fluid in my right ear. All my blood work is returning normal and brain scan clear. Has anyone had similar symptoms? Going crazy with worry and anxiety not knowing what is wrong. Thank you.

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Have you seen a rheumatologist?

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