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Undiagnosed - autoimmune?
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?
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I have rheumatoid arthritis so do have a rhuematogist.
He also diagnosed it as cheilitas granulomatosa.
He said sulfasalazine also.
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2 ReactionsI have bronchiectusus and have had it on going for about 13 years.
I take antibiotics for it daily.
I have a chronic cough also.
I see a pulmanary doctor about every 6 months.
I don't have any of your other symptoms. Sorry.
Hope you get some answers.
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2 ReactionsThank 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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1 ReactionThank you for sharing!! It’s great to hear so many other people being able to relate to the multiple symptoms with no answers. Has your hearing loss got worse over time? Since they can’t tell me what caused it they also can’t say if it will get worse. It’s always in the back of my mind that I could wake up deaf one day. I will keep you updated for sure as I move through this journey. Hopefully if one of us gets a diagnosis we can maybe help connect the dots for the other person. Thank you again for reaching out.
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2 ReactionsSorry for what you are going through. I have all your symptoms and then some. I was diagnosed in 2019 with GPA Granulomatosis with Polyangiitis. A Rheumatologist is who I would be looking for. They would not see your cough, ear and tingling as separate issues. If you come to the states I'd head straight to Mayo or Cleveland Clinic or John Hopkins. You need someone who specializes in the rare diseases. My GP, Hematologist, and ENT missed my diagnosis for over a year. My insurance company (of all people) told me to get to Mayo. By then my ENT was also getting suspicious of GPA and contacted my Hematologist for an ANCA blood test. The very best of luck to you! Keep advocating for yourself! Do check out the Vasculitis Foundation website. 🙏🏼
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4 ReactionsYes, I am on sulfasalazine. I also have a rhuematogist.
I have had steroid shots in my lip.
They last about 2-3 weeks.
I would like a copy of the report you received from the National Institute of Health.
Thank you for your concern and help.
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2 Reactions@schultzie Here is the article you requested. It’s very scholarly, so I tend to skip all the parts with numbers. (I’m not very scholarly!)
https://www.ncbi.nlm.nih.gov/books/NBK470396/
Let me know what you learn!
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2 ReactionsIt’s so frustrating to have obvious problems and get no answers! I would certainly pursue the possibility of autoimmune disease with a rheumatologist. These symptoms could all be related and sometimes symptoms precede lab evidence by months or years. I had symptoms of lupus for 10 years before my lab work showed a positive ANA. Lupus can certainly cause tachycardia and rashes. There’s autoimmune based hearing loss. If afib was documented on your ECG you should be on a blood thinner to prevent clots and stroke. If you get a rash again it should be biopsied with immunoflourescent studies. Sometimes lupus is diagnosed based on a skin biopsy of a rash. I would also want full thyroid studies done including anti thyroid antibodies as Hashimotos, an AI thyroid disease common in women can cause both tachycardia and afib and is treatable. In addition, you might review signs and symptoms of lupus, the quintessential AI disease , to see if you have any other symptoms, like sun sensitivity, joint pain, hair loss, etc. I know that sounds like a lot but unfortunately the burden to get diagnosed seems to fall on the patient these days, especially when multiple specialists are involved and symptoms seem unrelated. I hope you get answers soon!
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5 Reactions@slkanowitz. Just wondering if you have a medical background? You always have good suggestions!
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2 ReactionsYes, I am a retired nurse practitioner who also is a patient with multiple AI diseases plus other ailments. I retired because of my health but enjoy staying involved and helping others when I can. The immune system and the autoimmune diseases are particularly complex. I like to explain, teach and help others understand what they are dealing with in terms they understand.
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