1. < Autoimmune Diseases

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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rashida | @rashida | May 28, 2023
In reply to @jodiemc "Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles..." + (show)
@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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@jodiemc I have all of the symptoms you describe, except for the sweats and blistering hives. I have autoimmune diseases (fibromyalgia, psoriasis, etc.) so it is quite possible you do, too. Have you seen a doctor?

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moylandavis | @moylandavis | May 28, 2023

There are some really great suggestions here…especially about being your own advocate and researcher…
Through my own search for answers, I found a doctor who has a specialization in supplements and homeopathic remedies. She did a full range of tests on vitamin levels…I had several deficiencies…she did a few genetic tests…MTFHR gene mutation is super common…then she suggested the correct vitamins and supplements to correct the deficiencies…who knew that there were different types of B12? it really helped with some of my symptoms. I then went on a Keto diet…more improvements…and then anti-inflammatory diet…sugar is a big problem for me…

Now I see a immunologist who is able to focus on the remaining symptoms.

You may also want to look into Mast Cell Activation Syndrome…it often show up with Lupus.

Remember, lab tests are great but there is still so many things that they do not yet have tests for…

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novakp52 | @novakp52 | May 28, 2023

The other thing is soy. Between cutting out gluten and soy, my symptoms improved. But will say it is harder cutting out both.
All the allergist and homeopathic didn’t discuss it. Don’t take a lot of magnesium, it will aggravate your symptom also.
Keep pushing and keep asking questions.

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 28, 2023
In reply to @jodiemc "Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles..." + (show)
@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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Hi @jodiemc Welcome to Mayo Clinic Connect. I'm sorry for the anxiety you are feeling, and all the symptoms you are feeling. It will be real helpful for you to keep a journal with the time of day you have these, what you might be doing and severity, trying to find links of when these occur. This will also be helpful to the doctors you may get in to see.

Do you have any diagnosed disorders now, or on any specific medications, either over-the-counter or prescription? Changes in diet or environment recently? Piecing together what may be happening can sure be a challenge, definitely!
Ginger

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windyshores | @windyshores | May 29, 2023
In reply to @jodiemc "Hi, I'm 36 and I am currently experiencing a myriad of symptoms including: heat in soles..." + (show)
@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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Ask for an RA panel and an ANA with reflex, as well as sed rate and CRP- from PCP or rheumatologist. Usually a PCP can request these autoimmunity tests as well as tests for Lyme.

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southerngrits | @southerngrits | May 29, 2023
In reply to @seniormed "You can have autoimmune diseases with negative labs. Some of the first line screening labs are..." + (show)
@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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I agree with photos being helpful. I have to be careful when I show pictures of other things to friends though. My HS is on the bottom of my boobs a lot.

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casey1329 | @casey1329 | May 30, 2023

Perhaps that question would be better asked of a neurologist cause I sure don't know. What I do think is that you are having a lot of inflammation and maybe finding out why would be helpful but I'm not a medical person and just guessing...good luck !

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dtorelli | @dtorelli | May 31, 2023

Have you seen a Rheumatologist/Immunologist to see if you have Lupus?

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ladybenites | @ladybenites | May 31, 2023

As a lab director, there are thousands of diagnostic lab tests. To say that your lab results are normal says to me that you have not had the correct lab tests ordered yet. Without knowing exactly which tests you have already had, it’s impossible to know what diagnosis your physician was ruling out. It seems that you need a referral to specialists- neurologist, gastroenterologist, immunologists, or endocrinologist.

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kendrakh | @kendrakh | May 31, 2023

I firmly believe tests are more accurate when taken during a flare.
That said, my tests only show some of my symptoms in bw. Ie: it shows low- no inflammation but inflammation is clearly visible throughout different parts of my body.

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