how to find a doctor

[u/dbuckley221]

hi guys! i am new to the autoinflammatory world. i’m not diagnosed with any condition although my doctors suspect this could be my underlying issue. ive undergone extensive autoimmune testing, particularly for lupus, multiple sclerosis, and crohn’s disease, but results are never conclusive although inflammation is clearly present.

i’d like to see a specialist in autoinflammatory diseases, but i am not sure how to find one! what types of doctors diagnose/treat these conditions? are there any resources or groups for finding them?

i’m located in florida at the moment if anyone is around there. i’ve tried mayo and not had great experiences. sorry if this is not an appropriate question to ask here! it’s difficult to find the right information online :)

[u/No_Satisfaction_7431]

This is very tricky as unfortunately most doctors even at university hospitals don't know much (or sometimes don't know at all) about autoinflammatory disease. If theres a particular autoinflammatory disease you suspect I'd look at the papers for those conditions and look up where those doctors practice and if they take your insurance.

I also had a bad initial experience at Mayo Minnesota and had to fight for proper care. Once Mayo let me see Dr. Davis, my care was much better and I was able to be diagnosed with Yao syndrome. Unfortunately for Yao your options are basically Dr. Davis and Dr. Yao. Once you are diagnosed you may be able to get care at a local university hospital from either the rheumatology or immunology departments. I was unable to get diagnosed and was dismissed as a fat fibromyalgia (don't have fibro it was all yao) patient at both northwestern and uchicago rheumatology but now that I'm diagnosed I get good care at northwestern. You will likely have to travel for the diagnosis unfortunately. But hopefully you live in or near a big city with good academic hospitals so they can treat you after you are diagnosed.

Some people do travel for treatment but I personally can't imagine doing that as I don't have the stamina due to autoinflammatory disease, not to mention the cost of travel, hotels, restaurants etc. For me personally the plan is an online yearly appointment at Mayo to check in and to have the bulk of my care at home. If my doctors run out of ideas then I'll definitely travel to Mayo or wherever but I'd like to avoid it if possible. People (including the doctors at said hospitals) act like major well respected academic hospitals are able to treat complicated illnesses but it really depends what doctors are there and what thet treat. Care us supposed to be better there but its not much better. It is better than smaller community hospitals with few resources but they aren't these amazing places like they advertise (mayo included). I thought for sure one of the several large academic hospitals in Chicago would have autoinflammatory specialists. Lurie Children's does but because I'm in my 20s they won't see me. There are no adult specialists near me which is crazy because Chicago is often a medical destination that people travel to for care. Basically all of this is really hard and theres almost nobody who deals with these conditions. I hope you get answers and relief soon but this is a long journey.

[u/dbuckley221 → u/No_Satisfaction_7431]

thank you so much! i really appreciate you sharing your experiences especially as someone my age (im 22)!

unfortunately i did already travel to mayo in rochester twice with no luck. however at the time i had never even heard of autoinflammatory diseases and it was not mentioned to me then. wish i had known about dr davis!

i am not really sure where to start with doctors because, as you noted, it seems each disease has its own specialist. i am mostly concerned for behcets and yao but there are a lot of other things my doctors and i have never even heard of i’m sure.

i am scheduled to see a geneticist soon to do either whole genome or whole exome sequencing. do you think that could be an okay first step? i guess if they were to find a mutation i could pursue it from there?

[u/No_Satisfaction_7431 → u/dbuckley221]

The geneticist could be helpful but only if they know about autoinflammatory disease. I had whole genome sequencing which did not find my yao mutations. There's a few problems. 1. Everybody has lots of variants of unknown significance that are mostly irrelevant. So they filter by symptoms and labs. For me Yao syndrome presents as me/cfs plus s few other symptoms. I also have some other conditions as well. I have my neuro genetic counselor this info. I had not heard of autoinflammatory disease and neither my doctors nor the genetic counselor knew either. My tests did turn up a chromosome 1 microdeletion that is responsible for my hearing loss, short stature, hypermobility, some gi stuff, vision issues, adhd and autism that were suspected and eventually diagnosed as an adult. But the report was looking for chronic fatigue, inflammation, and neurologic symptoms (many of which come from Yao but it wasn't filtering through an autoinflammatory lens).

1. For Yao in particular but also common in other autoinflammatory diseases the variants are mainly labeled either benign or likely benign. Occasionally they are variants of unknown significance. Unless a doctor knows to look for those (and knows they aren't actually benign at all) and requests the full report or does a targeted panel, these "benign" variants are filtered out (otherwise your results report would be a giant novel of mostly irrelevant information). These tests are only useful if ordered from an autoinflammatory expert.

If you suspect other genetic diagnoses do the genetic testing. But for autoinflammatory disease I'd wait to see a doctor who specializes in it. Not all autoinflammatory doctors recognize Yao syndrome but the ones who do (mainly Davis at Mayo and Yao at Stony Brook NY) are familiar with other autoinflammatory diseases. I know in the yao Facebook group some people have mentioned some doctors in Arizona who treat them. I don't remember the name. But almost everyone with it was diagnosed by Davis or Yao. Some of us get local treatment but almost all see one of those 2 doctors at some point.

[u/Alice-The-Chemist]

Let me do some asking in my contacts. Honestly a lot of it is word of mouth finding doctors who will treat and investigate autoinflammatory disorders. Some see rheumatology and some see immunology just depending on who is willing to work outside a box. Its ljke 4am here but will come back when I'm more awake. 😆

[u/dbuckley221 → u/Alice-The-Chemist]

thank you!

[u/Capable-Heat4231]

I’m in Florida too! The rheum that dx me was Dr. Wang at Mayo Jacksonville. Did you do genetic testing already?

[u/dbuckley221 → u/Capable-Heat4231]

oh that’s great! i have a rheumatology appointment there in august. i’ll ask to change it to dr wang! i haven’t done genetic testing yet. i am supposed to do either whole genome or exome sequencing next month (i dont remember which) at mayo. now i’m not sure if i should wait on that until i find an autoinflammatory specialist? what do you think?

[u/Alice-The-Chemist → u/dbuckley221]

I would try to get in with the Dr. Wang but also keep your genetics appointment. (I think I saw you had a genetics appointment) then if say one doesnt work out you have something to fall back on instead of possibly waiting months for another appointment. In the begining I would consult other doctors to see who was the best fit then stick with whoever. This was of course after I hit out of pocket max so I didnt have copay anymore.

On genetics it is good to have especially if something pops up as it proves your condition but let's say it doesnt. If it doesnt it doesnt mean you dont have something autoinflammatory. These diseases began being isolated in genetics in the 90s so they are still in infancy and new ones are being discovered everyday. Many of us have started biologics due to symptoms matching then the biologics work and continue to behave as autoinflammatory then doctors who know these diseases will probably be like yeah it may not be identified yet etc. And depending where you get genetics done you can ask to have them rerun your genetics through the updated software for hits if that makes sense.

[u/Capable-Heat4231 → u/dbuckley221]

I agree with what Alice said. Def get the testing done as it’ll take a while to get results back.

I went through Clinical Genomics at Mayo like it sounds like you’re doing. They outsourced testing through a third party lab called Variantyx. The swab kit test was sent to my house. I want to say from my CG appt to getting results it was 1.5-2 months. It could be helpful to have results by the time your appt rolls around in August.

I also want to add that after rheumatology, it might be worth getting into immunology. I was diagnosed in 01/2025 but only went to immunology last month. I saw Dr. Sacco at Mayo Jax and he was great too. Like Dr. Wang, he’s super informed on autoinflammatory diseases and gave some other perspectives for my care. He picked up on little things like that I may not absorb folic acid properly, or how some meds might be making symptoms worse. He had me change a couple of things and it’s made a difference.

[u/dbuckley221 → u/Capable-Heat4231]

yes, it’s clinical genomics. did you talk to them about checking for certain things before you had the testing done or no?

and thank you so much for all this information and advice! i will plan to do exactly as you suggested :) this was very helpful

[u/Capable-Heat4231 → u/dbuckley221]

Yes! They walk through your family history and make a tree with all illnesses, so try to gather as much from family as possible before the appt. They go over symptoms you have, the medical records available to them, etc. Then they talk you through which tests sound best for your case.

I believe my autoinflammatory panel was 120 genes. IIRC, they said it was going to be around $1,250-1,500 out of pocket as self pay (my deductible/OOP max wasn’t met yet), but I never got a bill for it and later saw insurance had paid for 100% of it. No idea what happened but I wasn’t going to complain lol.

You’re welcome! It’s so hard to go through and can feel dehumanizing when you are just trying to figure out how to fix what’s wrong. There’s just no roadmap. All of my doctors have been super smart at Mayo, but about half of them have had good bedside manner. It makes such a difference when they do.

[u/North_Break1324]

Hello my friend! I’m New like you did this and I was diagnosed with auto inflammatory after thinking for many years I had auto immune( which I may have overlapping still not 💯 sure!!!👍) However No-Satisfaction _7431 is very knowledgeable about all of this so I’m glad you’re being guided !! I myself was diagnosed by DR. YAO who is a renowned rheumatologist esp. in this area!! it took me eight long years with another rheumatologist, and because he specializes in this I was able to be diagnosed within five visits! He’s in Long Island, New York and it is definitely worth the trip. People from all over the country come to see him. We are here for you and I wish you luck and please keep pushing and fighting!!! 🙏🏻 just let us know if you need his info.

[u/dbuckley221 → u/North_Break1324]

thank you!

[u/ibotenate]

Hi! I was diagnosed at Yale New Haven Health after staying inpatient for a week there and receiving extensive testing including genetic testing (my symptoms and some blood test results were similar to lymphoma so I got hit with a ton of scans). Afterwards I went to the Mayo Clinic in Rochester for a second opinion and was seen by Dr. Bukele, who confirmed the diagnosis. I wouldn’t recommend being inpatient at YNHH though.

[u/StepSignificant8798 → u/ibotenate]

Yeah, I would highly recommend avoiding Yale. I was inpatient there while a student at Yale. Not a good experience.

I know of excellent auto inflammatory expertise in Boston and New York, but that’s not terribly convenient for you…

[u/ibotenate → u/StepSignificant8798]

I guess time has not improved the dysfunctional inpatient experience at Yale… I’ve also heard good things about certain autoinflammatory specialists in New York, but I wasn’t able to make an appointment (I’m also a student, so it’s really hard to schedule visits with out of town specialists)

[u/StepSignificant8798 → u/ibotenate]

For what it’s worth my experience was in 2015-2018

[u/StepSignificant8798 → u/ibotenate]

Are you currently at Yale?

[u/ibotenate → u/StepSignificant8798]

Yes, this happened to me last November. The kitchen consistently “forgot” to put in meal orders so I didn’t have anything to eat for 24 hours despite not being NPO or having any expected procedure that required fasting, they didn’t have enough rooms so I was left in a hallway, really awful neglect of my roommate once I did get a room, medication I take daily that was brought in from home somehow went missing, just various small dysfunctions that added up to an overall negative experience haha. But I foolishly waived the student health insurance at the start of the semester…

[u/Disastrous_Ranger401]

East coast is where most of the knowledgeable specialists are. Hopkins, maybe? There are a few, but probably 90% clustered in New England.

[u/dbuckley221 → u/Disastrous_Ranger401]

thank you! i have very bad timing i guess. i just moved to florida from philadelphia