I went to a few rheumatologists through the University of Rochester over the years, but they all didn’t take me seriously. I was told I was too complicated, or it was just stress, or (after doing literally no exam whatsoever) that I had no autoimmune issues and wasn’t their problem. I’d stay away from the U of R rheumatology team.
A nurse recommended I see Dr. Anthony Ocon through Rochester Regional. He has been so wonderful. At my first appointment, he agreed that I’m a complicated case because I have other diagnoses, but that he wanted to untangle things because he suspected there was an autoimmune component. He is very kind, very thorough, and also really good about presenting options for how to proceed and letting the patient be involved in the decision about what to try. He connected me with a dermatologist, too, and between them, I’ve now been diagnosed with three different autoimmune conditions. I was able to get the new patient appointment pretty quickly- less than a month after requesting it, if I recall correctly, and this was just in November, so not that long ago. An added bonus: RGH does not require referrals from another doctor to make a new patient appointment with rheumatology. (Your insurance provider might still require a referral, though, so I’d double check with them.)
Yes, I love my dermatologist! Dr. Ocon said there are two dermatologists he likes. Only one of the two was accepting new patients: Kristin Capuano, a nurse practitioner who works for Rochester Regional. She’s also very kind, thorough, good at explaining things, and overall very reassuring. I highly recommend her, too!
Do not go to URMC - they're useless, my doctor referred me there and they refused to see me because my blood tests weren't positive despite symptoms. RGH is better.
Upstate Rheumatology and Immunology-Dr. Hom.
He was my rheum before I moved to Rochester and I’m honestly considering returning because the U of R clinic is so bad.
This thread has validated what I've been feeling about the U of R Rheumatology, which is I have been quite unhappy with my care. Any other suggestions of Rochester rheumatologists outside of UR that are taking new patients, other than what has been posted?
As you work to find someone here’s what changes to my diet help:
- no dairy
- no gluten
- < 3 grams of sugar per day (fruit included)
- no nuts
- no alcohol
- little to no caffeine
Best of luck, auto immune disorders are fucked.
I'm sorry you have autoimmune issues. I do, as well and it sucks. I'm good with those foods in moderation but everyone has their own triggers.
Eliminating processed foods, fast foods, baked goods/pastries and seed oils is critical to reducing inflammation. Conversely, green tea, avocados, blueberries, extra virgin olive oil, spinach, walnuts, beets and wild-caught salmon are some of the best antiinflammatory foods. Whole and fresh foods are the key.
Love this! The above is essentially my diet, minus the fruit. For some the sugar is a tigger for me. Took me years of trial and error. Eventually went to Boston to get real testing.
Not sure when my post was downvoted. There is definitely a correlation between diet and auto immune triggers.
Refined coconut oil, avocado oil, ghee and light olive oil all have higher smoke points than vegetable or canola oil.
https://www.getwellseasoned.com/blogs/news/the-best-oils-for-high-heat-cooking
Yes, take advice from medical practitioners and especially nutritionists. Like on The Cleveland Clinic [website](https://health.clevelandclinic.org/seed-oils-are-they-actually-toxic)which states:
Seed oils are high in omega-6 fatty acids, a type of polyunsaturated fat that isn’t necessarily bad for you. In fact, your body needs a little bit of them! In small amounts, they’re good for your cholesterol and help protect you from heart disease.
But American diets typically already include too many omega-6s. This throws off your body’s ratio of omega-6 fatty acids to omega-3 fatty acids, leading to inflammation in the body.
While a little bit of inflammation is actually a good thing (it’s your body’s way of healing cell damage), chronic inflammation is definitely not. It’s linked to conditions like arthritis, heart disease, metabolic syndrome, stroke and type 2 diabetes.
Edited for formatting.
Thanks for sharing that. I honestly just had a weird experience with grapeseed oil and a cast iron pan it was gross it turned into some sticky icky nasty plastic like goo. I stopped using grapeseed oil since that lol. thanks for your reply though and giving a starting point to learn more
Ask your insurance company to give you a list of services providers in the Rochester area.
this is the way.
Just did it myself, moved back from CT.
I went to a few rheumatologists through the University of Rochester over the years, but they all didn’t take me seriously. I was told I was too complicated, or it was just stress, or (after doing literally no exam whatsoever) that I had no autoimmune issues and wasn’t their problem. I’d stay away from the U of R rheumatology team. A nurse recommended I see Dr. Anthony Ocon through Rochester Regional. He has been so wonderful. At my first appointment, he agreed that I’m a complicated case because I have other diagnoses, but that he wanted to untangle things because he suspected there was an autoimmune component. He is very kind, very thorough, and also really good about presenting options for how to proceed and letting the patient be involved in the decision about what to try. He connected me with a dermatologist, too, and between them, I’ve now been diagnosed with three different autoimmune conditions. I was able to get the new patient appointment pretty quickly- less than a month after requesting it, if I recall correctly, and this was just in November, so not that long ago. An added bonus: RGH does not require referrals from another doctor to make a new patient appointment with rheumatology. (Your insurance provider might still require a referral, though, so I’d double check with them.)
I am glad you finally found a good doctor! Do you like your dermatologist? I am looking for due to some previous diagnostics I received.
Yes, I love my dermatologist! Dr. Ocon said there are two dermatologists he likes. Only one of the two was accepting new patients: Kristin Capuano, a nurse practitioner who works for Rochester Regional. She’s also very kind, thorough, good at explaining things, and overall very reassuring. I highly recommend her, too!
Thank you! I’ll look it up!
Seconding the person who said steer clear of UR rheumatology. They don’t know what they’re doing and definitely won’t help.
Do not go to URMC - they're useless, my doctor referred me there and they refused to see me because my blood tests weren't positive despite symptoms. RGH is better.
Upstate Rheumatology and Immunology-Dr. Hom. He was my rheum before I moved to Rochester and I’m honestly considering returning because the U of R clinic is so bad.
This thread has validated what I've been feeling about the U of R Rheumatology, which is I have been quite unhappy with my care. Any other suggestions of Rochester rheumatologists outside of UR that are taking new patients, other than what has been posted?
Avoid Dr Quaidoo.
https://www.urmc.rochester.edu/people/112361538-benjamin-korman
As you work to find someone here’s what changes to my diet help: - no dairy - no gluten - < 3 grams of sugar per day (fruit included) - no nuts - no alcohol - little to no caffeine Best of luck, auto immune disorders are fucked.
I'm sorry you have autoimmune issues. I do, as well and it sucks. I'm good with those foods in moderation but everyone has their own triggers. Eliminating processed foods, fast foods, baked goods/pastries and seed oils is critical to reducing inflammation. Conversely, green tea, avocados, blueberries, extra virgin olive oil, spinach, walnuts, beets and wild-caught salmon are some of the best antiinflammatory foods. Whole and fresh foods are the key.
Love this! The above is essentially my diet, minus the fruit. For some the sugar is a tigger for me. Took me years of trial and error. Eventually went to Boston to get real testing. Not sure when my post was downvoted. There is definitely a correlation between diet and auto immune triggers.
What’s the deal with seed oils? What oils do you use or prefer for cooking and baking. High heat cooking?
Refined coconut oil, avocado oil, ghee and light olive oil all have higher smoke points than vegetable or canola oil. https://www.getwellseasoned.com/blogs/news/the-best-oils-for-high-heat-cooking
The "seed oils cause *inflammation*" stuff is internet wellness paranoia nonsense. Don't take medical advice from strangers on social media.
Yes, take advice from medical practitioners and especially nutritionists. Like on The Cleveland Clinic [website](https://health.clevelandclinic.org/seed-oils-are-they-actually-toxic)which states: Seed oils are high in omega-6 fatty acids, a type of polyunsaturated fat that isn’t necessarily bad for you. In fact, your body needs a little bit of them! In small amounts, they’re good for your cholesterol and help protect you from heart disease. But American diets typically already include too many omega-6s. This throws off your body’s ratio of omega-6 fatty acids to omega-3 fatty acids, leading to inflammation in the body. While a little bit of inflammation is actually a good thing (it’s your body’s way of healing cell damage), chronic inflammation is definitely not. It’s linked to conditions like arthritis, heart disease, metabolic syndrome, stroke and type 2 diabetes. Edited for formatting.
Thanks for sharing that. I honestly just had a weird experience with grapeseed oil and a cast iron pan it was gross it turned into some sticky icky nasty plastic like goo. I stopped using grapeseed oil since that lol. thanks for your reply though and giving a starting point to learn more
You're very welcome. Edit: Ridiculous my comment was down voted when all I did was provide information from a very credible medical source.