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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jodiemc | @jodiemc | Jun 20, 2023

In reply to @johnbishop "Hello @jodiemc, I would like to add my welcome to Connect along with @casey1329, @windyshores and..." + (show)

Hi, I'm just on Famotidine for acid reflux when needed.

jodiemc | @jodiemc | Jun 20, 2023

In reply to @maryecox "Have you seen a rheumatologist?" + (show)

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

Becky, Volunteer Mentor | @becsbuddy | Jun 20, 2023

In reply to @jodiemc "I have an appointment this Thursday, had to wait 3 weeks" + (show)

@jodiemc I’m so glad you got an appointment! Now, are you prepared for the appointment? Like @gingerw suggested, you want to keep a journal of what happens and when and if anything might have triggered it. All of this makes it easier for the doctor. This discussion on tips for a good diagnosis might also be of help.
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
What’s the number 1 thing you can do do help yourself in the next 3 weeks?

maryecox | @maryecox | Jun 20, 2023

In reply to @jodiemc "I have an appointment this Thursday, had to wait 3 weeks" + (show)

Excellent!

maryecox | @maryecox | Jun 20, 2023

Keep on posting!

beckybarnes | @beckybarnes | Jun 20, 2023

In reply to @megangreen "Yes, it is called being ‘seronegative’ ie. you have a disease/condition which can be diagnosed symptomatically..." + (show)

Did your doctor believe in seronegative? My Rheumy did not. I am no longer with her. My symptoms started with undx Grave's Disease that became a thyroid storm while I was in nursing student clinicals in 2009. I never recovered but I am in remission. My symptoms remain.

susanjc8 | @susanjc8 | Jun 20, 2023

So sorry you're having to go through so much at such a young age. I went for about ten years with weird symptoms that were not indicated by all the blood work also. I finally got to a good rheumatologist, who told me that this is certainly possible, especially with a one shot test and no further follow up. She started off by seeing me quite often, and rerunning the blood work every time. Before long, the ANA started running positive, but not always. We kept doing this until she was finally able to diagnose mixed connective disease, which is kind of the kitchen sink of autoimmune diseases. Of course, I was flaring on and off the whole time. I have to give this lady a lot of credit, since over time, she built a treatment plan that has kept this disease at the minimum for 30 years. A couple years ago, she retired, and I haven't found anybody as good since. You have to be tough and be your own advocate for yourself, or this complicated stuff can ruin your health. I would also encourage you to get into a Mayo Clinic, or at least a really good teaching hospital's rheumatology group.

cpd54 | @cpd54 | Jun 21, 2023

Bless your heart! What a horrible time
In your life to have to be dealing with this. Have you done any food allergy testing? Also, have you considered seeing a functional medicine doctor? They tend to think outside the box. Wishing you good things in your health journey.

SusanEllen66 | @SusanEllen66 | Jun 21, 2023

@millyg6 I am sorry to hear that you have been going through this nightmare. You know something is wrong, but tests show nothing and it makes you wonder about your own sanity sometimes. At least that’s what happens to me!

I have several autoimmune disorders with inflammation all over my body. My blood tests are almost perfect. I don’t think blood tests reveal the entire story, and some providers don’t look beyond them. I had a biopsy to confirm my first autoimmune disease. A blood test would not have helped.

I hope you have found a good rheumatologist to treat you. Please let us know how you are feeling.

emo | @emo | Jun 23, 2023

Hi @millyg6- I know your post is from a while ago, but I came across it and clicked, because I have an autoimmune arthritis with perfect labs. It definitely is possible. As others have said, they call it “seronegative.”

So sorry you’re going through this and hope you’ve been able to make some progress or find answers?

I wonder if your response to gluten could be clue?

Another thing I thought of that you might want to look into is MCAS (mast cell activation syndrome). Its usually diagnosed by an allergist, but you could look it up and see if you think it might fit your symptoms.

It’s so frustrating because a lot of these symptoms are “nonspecific.” I’d agree with the others who suggested perhaps being seen at an academic medical center if that’s an option, or somewhere like Mayo or Cleveland Clinic that offer comprehensive and integrated evaluations.

Hoping you’ve been able to make some progress.