Worried about upcoming rheumatologist appointment

Would you please share the name of the Duke rheumatologist you are happy with? I live in that area and cannot find a doctor with AIED experience. I need someone stellar!! Thanks!

He’s affiliated with Duke but is actually in Burlington at Kernodle Clinic West. His name is Dr. Mayur Patel and his office is at 1234 Huffman Mill Rd, Burlington NC. His phone is 336-506-1280.
And he is very good. He I s actually a PharmD as well as an MD - which seems really smart given that pharmaceuticals are the mainstay of immune disorders.

Good luck!! Tell them I referred you.

You are the BEST!! Thank you!

I wanted to offer an update, for anyone that was following…I saw a dermatologist in January that biopsied the red rash on my arm. When I went back for the results two weeks later she said that she had personally spoken to the pathologist because the report was unclear/ conflicting. They determined that they were going to call it psoriasis with overlaying eczema/ dermatitis. She gave me a biological cream to use and wanted me to start Rinvoq (jak inhibitor, I believe) based on my other symptoms. I had to get more blood work and wait for an approval process to happen to actually get this drug. In the meantime (I was left waiting for weeks to receive an update about this drug approval and the call actually came while I was at my rheumatologist appointment ironically), I got in to see the rheumatologist. He was very different then the one I saw years ago that treated me horribly and after reviewing my results and examining me, he stated that he does not believe that I have psoriasis whatsoever and that I am the clinical picture of Lupus. He was unbothered by my past negative ANA results and told me to not start the Rinvoq, he was prescribing me hydroxychloroquine. I have just started this medication and am feeling hopeful for the first time in a long time. I go back April 1st to see how I am responding. He said we will repeat the ANA at some point, he is slightly concerned that without a positive result he may be limited in treatment options. I have been battling a roller coaster of emotions but am just thankful that someone finally listened and named the beast that I have been battling for so long.
Thank again for the support that so many of you offered when I came here feeling desperate and overwhelmed. I never knew that strangers words could mean so much. ❤️

Where do you live? Is it in an area with a teaching hospital? If so you might consider seeing a doctor there - they might be better suited to help you. I agree that rheumatology is iffy at best. I have had vague and incomplete answers from the ones I have seen. I do my best to work with them because I actually have a problem that is in their wheelhouse, however little is known about it and the most common reply I get is "every patient is different".
Doctors in practice not a part of a teaching environment are less prepared to work with patients that do not have mainstream problems. Insurance companies have seen to it that your appointment is short, targeted and with an assumption that there is a medicine that can be Rx-ed once the tests reveal the problem.
Mayo Clinic has a referral service as does Cleveland Clinic and I suspect several other major medical schools offer the same type service. I would think that consulting services would enable you to have them see you but have your local doctors treat you. My experience is that teaching environments are open to consulting with another specialty whereas that mind set is uncommon in the private practice world.
I have been fighting multiple problems for years, brought on by an adverse reaction to a vaccination 5 years ago. It is not easy to unwind the symptoms to find a treatable problem.
I have had 95% of the tests to come back normal - yet not one doctor has ever said I am well, or it is in my mind - they agree the problems are real, but finding solutions is difficult.
BTW - I had a doctor 50 years ago tell me that menstrual cramps were in my mind - I was denying my childbearing role in society. He said it was all in my mind, needed mental eval. He was wrong - I was right. You know how you feel. Walk away from any doctor who you believe is not helping you.

mas0415 I know this will sound crazy - but a couple of years ago I had a hysterectomy and it cleared up my IBS-D as well as eliminated the massive hip girdle pain that my rheumatologist attributed to PMR and did not believe me that it was not the classic pain of PMR. It was first identified thru an MRI taken in the ER when my pain compelled me to go in. A vaginal sonagram confirmed the existence of several tumors that needed to be removed ASAP. Fortunately, they were all benign and so recovery is what I focused on. I have reduced many of my autoimmune problems as a result as well as completely eliminated the IBS-D. If you have any abdominal pain or other abdominal symptoms like bloating or tenderness I would suggest you visit your Gynecologist and don't take No as an answer until they order an MRI. My tumors were initially seen in a 2015 MRI but no one told me that it needed to be watched, and my doctor left the practice, so it fell thru the cracks. You need to make sure and read all imaging reports and ask questions - lesson learned.

Thank you for your suggestion. I actually had a hysterectomy in March 2023. I was chronically anemic and had previously had a portion of my uterus removed, and 2 c sections. So, at this point I had a lot of scar tissue, pains, and the anemia, I was done. I was hopeful that the hysterectomy would clear up many of my issues. While I don’t regret it one bit and I have since been able to maintain my hemoglobin, it has not relieved my IBS-D or lower back pain as hoped.