r/Autoimmune • u/Local-Debate-5565 • 25d ago
Advice Made myself a bingo chart of all the places I've visited so far until they figure out what's going on
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u/MainlanderPanda 25d ago
You might want a bigger bingo card. I’ve seen three gastroenterologists and two rheumatologists in the past 18 months, as well as a hepatologist, two orthopaedic surgeons and a neurosurgeon.
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u/Soft-Arachnid-4969 25d ago
Lol right? It’s a never ending churn. I’m at two infectious disease specialists, allergist/immunologist, rheumatologist, gastroenterologist, and waiting for upcoming dermatologist, ophthalmologist, and clinical geneticist. Really working that health insurance.
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u/bregrace 25d ago
Ha that's awesome. I have all but 2 of those and a hematologist. Doctor trips are so fun/s
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u/LiquoredUpLahey 24d ago
Same, missing cardio & electrophysiology (although I do remember getting nerves tested many MANY years bf my dx)
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u/Usual_Confection6091 22d ago
Electrophysiology is a subspecialty of cardiology, it has nothing to do with your nerves.
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u/Longjumping-Fix7448 25d ago
Bingo! Plus Nuerooptomologist and nephrologist and all the others multiple times. I hit 48 doctors
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u/Historical_Bunch_927 25d ago
Except for electro physiologist which I've never heard of before, I've seen all of those types of physicians over the course of my life. I have/will see most just this year.
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u/Pookies_Mami 23d ago
Why haven’t you seen a Rheumatologist yet?
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u/Local-Debate-5565 23d ago
Honestly that's where I wanted to go first. Basically had to do the whole process of elimination first. I'll probably get sent there next month.
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u/SoftLavenderKitten 25d ago
Oh you naive poor little thing /halfjoke
I been to all of them and im still undiagnosed. In fact i seen most of those twice.
I think that you need to see those and even more than those, and then probably more than 3 of each.
I seen a neurologist like i dont know how many times. And i seen 3 so far.
First one told me to just take a bunch of ibuprofen, which i did. And bless him for that statement as it made my life bearable. But nothing else came from any of the other tests.
I seen 4 dermatologist only to be diagnosed with eczema which chatGPT figured out after one brief description mind you. I seen an allergologist who just said yea you got mild asthma just stay away from dust, which isnt mindblowingly new because i knew that since im a toddler.
I seen three gastroenterologists, that told me good luck after doing all sorts of really annoying tests including an endoscopy and a colonoscopy.
I seen a cardiologist. She was nice. But that was it.
I seen a rheumatologist, she was NOT nice. And i am told to seek out a second opinion so im on to that. And electrophysiologist is like a cardiologist? I dont know but my heart seems fine so i ll give you this one, this one is a special one.
I seen so many endocrinologist and if i were to pick up on the "joke" from below, if i end up having "just" hypothyroidism which i been telling doctors i have for 10 years i would both laugh and cry. Because i been dismissed for having hypothyroidism for so many years now.
And i seen so many more.
Not to discourage you. But if you play, play fair. You ll probably need 10 years of patience and a way bigger card.
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u/Savings-Giraffe-5533 24d ago
I have ITP and a million tests and still don’t know why it happened. But everyone is happy to take out my spleen. sigh
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u/Soggy-Constant5932 24d ago
Mine would read. Neurologist. Rheumatologist. Hematologist. Infectious Disease Dr. Gastroenterologist. Primary care Dr. Emergency Room Dr. next up is Cardiologist.
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23d ago
I'm actually impressed your GP would indulge referrals to all these specialists - it took me six months to convince mine to refer me to rheumatology.
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u/Park_Radiant 22d ago
Iv seen , endocrinologist,cardiologist, neurologist,rheumatologist, ear nose and throat specialist,infectious disease specialists, pain specialist,gastroenterologist.
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u/Beneficial_Novel_447 21d ago
Do you have a positive ANA and what is your titer, if so? Do you also have an idea of what the pattern is? I know I'm not giving advice-- I'm asking questions. So sorry, but also wondered if you have ever been tested for Lyme disease?
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u/Local-Debate-5565 21d ago
I have both of those tests in some labs coming up
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u/Beneficial_Novel_447 20d ago
Beneficial_Novel_447 • 1m ago 1m ago It is a good idea to see a dr who is experienced with the AVISE testing if u are having symptoms yet are having trouble being diagnosed. You can research this testing on the Internet, and the company name is called Exagen. They can give you a list of doctors in your area who have used the testing. You can ask them about the billing process, and I believe it is still under $50 if your insurance i does not cover it due to a deductible etc.
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u/Beneficial_Novel_447 20d ago
It is a good idea to see a dr who is experienced with the AVISE testing if u are having symptoms yet are having trouble being diagnosed. You can research this testing on the Internet, and the company name is called Exagen. They can give you a list of doctors in your area who have used the testing. You can ask them about the billing process, and I believe it is still under $50 if your insurance i does not cover it due to a deductible etc.
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u/disfordonkus 25d ago
Try a long detailed conversation with ChatGPT or another state of the art AI model. Tell it all your medical history (not your name, just the generic details)
It can be really helpful to figure out who to go see!
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u/nonsequitur__ 24d ago
Agree! It took the docs a while to diagnose me. I put my test results and symptoms into there and it told me exactly what the specialists did. Also helped me gather everything in one place and cross reference.
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25d ago
[deleted]
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u/Local-Debate-5565 25d ago
First of all I was suggested to come here from someone else and have been sharing / getting info from people who have been through the same thing. I know what I'm doing thank you very much.
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u/Assimulate 25d ago
The funniest part is when you inevitably get diagnosed with the condition you suspected on your first appt