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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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Where are you located? Do you have a good PCP to discuss this with? It is very hard when you have symptoms in different organs and body systems. Specialists tend to know their own specialty, and coordination can be poor.
I am so sorry you are going through all of this! And that you are not receiving the support you deserve.
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2 ReactionsSorry I should have mentioned that! I’m in Alberta Canada. I have a general physician but at this point he has no answers. I’ve seen a cardiologist, dermatologist and ENT specialist. So far everyone has just shared that they are sorry but they can’t tel me why these things are happening. At this point we are looking at the potential of coming to the United States to get another opinion and hopefully some answers.
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2 ReactionsThe hearing loss is a mystery but many of us have frustrating experiences with ENT's, frankly, because often there are no immediate answers.
Have you had a chest CT for the cough? Do you do steroid inhalers?
The heart is the most concerning. I also have episodic afib. Did they give you any meds to take when needed?
Your problems may all be unrelated. If they are related it is hard to get the medical providers to connect them.
Have you had an ANA test or any other tests for autoimmunity?
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2 ReactionsThanks for your comment. I had an ANA test done and it came back negative.
No CT for the cough, tried a couple inhalers but they didn’t seem to help.
Nothing for the heart. The cardiologist shared besides the abnormal ECGs my heart appeared fine so she had no answers.
Currently on no medication and just a whole bunch of doctors that don’t appear to have answers. I was told to just wait and see if something else happens. I have no idea if it’s all connected or all just random things. It’s become so frustrating that although the doctors can see something is wrong no one seems to have any answers of why.
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1 Reaction@amcivor, I'd like to add my welcome. Autoimmune diseases are notoriously challenging to diagnosis. If you use the Search for this group, you will find countless stories similar to yours. Here are a few discussions that you may wish to review:
- Tips for Getting a Proper Diagnosis of an Autoimmune Disease
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
- Undiagnosed Autoimmune Disease - No one will listen to me https://connect.mayoclinic.org/discussion/autoimmune-essentially-undiagnosed-but-miserable/
- For anyone who can't find a diagnosis: Undiagnosed Disease Network
https://connect.mayoclinic.org/discussion/for-anyone-who-still-cant-find-a-diagnosis/
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4 ReactionsThank you!! I really appreciate that! I am going to spend the evening checking these out!
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2 ReactionsUnbelievable, but I have very similar issues. I’ve never related them all, but am actually just recently beginning to think possibly autoimmune as a retired doctor friend of mine suggested. My hearing loss and tinnitus was diagnosed many years ago as meniere’s disease due to many bad ear infections asa child. I also was told I have unexplained “inflammation” innmy lungs and have an inhaler . Tge pulmonologist thoughtit might be due to my recurring Epstein Barr virus.I too have tachycardia and also had a couple episodes of v tach and complete heart block a year ago. I am now on meds for the arrhythmias and my electrophysiologist said, yes, it could be caused by autoimmune disease. Good luck with your search and we should keep in touch. I will let you know if they find an autoimmune disorder.
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2 ReactionsThis 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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2 Reactions@rockmama Welcome to Mayo Clinic Connect! I think you’ve found the right place! You’ve described many annoying health problems and you’ve seen several doctors, but you don’t have a diagnosis. The electrophysiologist thinks it could be an autoimmune illness, so why not find out!
Can your primary care doctor refer you to a rheumatologist who can help put the puzzle pieces together? Can you call tomorrow?
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2 Reactions@schultzie Ouch! That looks like it hurts! Welcome to Mayo Clinic Connect! I hope our members are able to help you.
Can you tell me more about this? When did it start? You are being treated with sulfasalazine? Did they ever use steroids?
I looked this up on the National Institutes of Health website. Would you like a copy of their report?
What can we help you with?
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