Undiagnosed - autoimmune?

Posted by amcivor @amcivor, Sep 30, 2023

I am reaching out as I am unsure where else to go or what my next steps should be. I am hoping someone may have similar symptoms and have insight on what I should do next.

Here is my story. I’m a 34 year old female, mother of three. I exercise 5 days a week and live a healthy life style. I am a social worker and prior to that was a stay at home mom.

In 2017 I developed a chronic cough. Doctors were unable to determine what caused it or how to help get rid of it so the cough continues to remain to this day.

In 2019 I developed a rash on my legs. Again, doctors looked at it and were unable to determine what the rash was or what would have caused it. The rash went away on its own in about 7-10 days.

In 2021 I noticed my hearing seemed to be going. I was dismissed by doctors as my ears looked fine - no wax build up, and due to my age they did not believe I could have hearing loss. I accessed a clinic for my own hearing test and it was determined in 2022 that I had moderate to severe permanent hearing loss in both ears. I was sent to an ENT specialist who shared that my hearing loss was due to exposure to ongoing loud noises. My husband and I explained I have not been around loud noises and my career does not expose me to loud noises. The ENT specialist shared this is the only thing that would have caused it and had nothing further to say. He suggested I get hearing aids though as he reiterated the damage is permanent. My ears continue to feel “full” all the time and my tinnitus is there daily.

This month I had tingling in my right arm and it felt like dead weight. It went away after a day however my left arm became numb. The numbness would come and go through the day but then it felt like a rock was sitting on my chest. My blood pressure kept showing A-fib randomly when I tested. My apple watch showed my heart rate in reasons drastically even when I walked (146 beats a minute). After on and off symptoms for 4 days I went to the emergency room, (my doctor was away for another 3 weeks). The doctor ran numerous
ECGs that kept coming back abnormal. But everything else (blood work, urine and X-ray) came back normal. I was sent via ambulance to a city to see a cardiologist. I had ongoing tests for three days and everything kept coming back normal. By this time my heart rate had decreased and I was feeling fine. My ECGs continued to be abnormal. The cardiologist shared my heart appeared perfect and she had no answers for my ecg or symptoms.

I am becoming very frustrated as all blood tests that are being ran come back normal or slightly higher or lower than normal but the doctors share that’s fine. I have no answers for anything. Has anyone had similar symptoms and can lead me in the right direction?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Have you considered removing all sugar and grains and processed foods and seed oils from your diet?
I'm just starting an elimination diet myself. I don't know where it will lead but I have noticed less pain in only 4 or 5 days.

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@schultzie

Thank you for touching base.
I also have a lung disorder called bronchiectusus.
They say that is probably autoimmune also because I have rheumatoid arthritis.

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@schultzie, you may also be interested in following this support group on Mayo Clinic Connect:
- MAC & Bronchiectasis Support Group https://connect.mayoclinic.org/group/mac-bronchiectasis/

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@colleenyoung

@schultzie, you may also be interested in following this support group on Mayo Clinic Connect:
- MAC & Bronchiectasis Support Group https://connect.mayoclinic.org/group/mac-bronchiectasis/

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Thank you.

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@dandoss63

Have you considered removing all sugar and grains and processed foods and seed oils from your diet?
I'm just starting an elimination diet myself. I don't know where it will lead but I have noticed less pain in only 4 or 5 days.

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Yes. I just started to cut out processed food.
I need to find out if there is another name for benzoate.
It is a preservative put in foods to prevent molding.
Nothing ever says benzoate.
Also cinnamon.
Thank you for your suggestion.

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@schultzie

Yes. I just started to cut out processed food.
I need to find out if there is another name for benzoate.
It is a preservative put in foods to prevent molding.
Nothing ever says benzoate.
Also cinnamon.
Thank you for your suggestion.

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Agreed. My doc told me to cut out sugar, gluten, dairy, preservatives and processed foods. I found a preservative listed on foods ( it's a 3 letter thing). I had to look it up but it's something to be avoided. We also rinse off all of our canned vegetables. It's amazing how much sodium comes out. My doc highly recommends a Mediterranean diet plus fresh fruits and vegetables. Hope this helps.

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I had a nurse that works for an ENT that said I should try a gluten free diet.
Thank you for your info.

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@schultzie

This was diagnosed as cheilitas granulomatosa.
Please help me.
They just say to stay on the sulfasalazine.
They have been much bigger then this photo.

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@schultzie59 how is the cheilitis granulomas now? Any improvement?

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I can empathize with your stress and frustration. It must be so hard to deal with all of your health issues while working, being a mom of three and taking care of a home. I had some similar symptoms (chest/pain/breathing/cough, heart/palpitations, rashes, hearing loss, tingling and numbness in limbs. What you describe sounds neurological to me. You may benefit from an evaluation from a good neurologist. Small fiber neuropathy and central/peripheral/autonomic nervous system may be behind some of your symptoms. I, too, would get many “normal” test results but my neurologist did diagnose me with small fiber neuropathy (punch biopsy), radiculopathy, iron deficiency (blood test showed normal but another panel showed deficiency), etc. You may need EMGs and MRIs to help rule out anything neurological. I did get diagnosed eventually with Hashimoto’s, cervical spondylitic myelopathy and thyroid nodule as well as had explant to remove breast implants due to breast implant illness. It has taken me more than 7 years and many tests and doctors to piecemeal my diagnoses and treatments. My hope for you is you can get a good doctor who listens to your symptoms and does the right tests to help diagnose you and get you some relief of your symptoms to improve your quality of life. May God bless you!

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I would like to strongly suggest that everyone use @pseuonym of the person they are responding to. Then the answer will go directly to that person! Makes it easier for everyone!
Becky

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