So many questions. Seeing Rheumatology and GI at Mayo JAX

Dr. Ronald Butendieck is the Rheumatologist who I first saw at Mayo Jax in 2019. He confirmed diagnosis, layed out a treatment plan and offered to be in communication with my doctors back home. I was very pleased.

You are doing exactly what you should so move forward and don’t look back. Take time to give yourself a big pat on the back ! I had an amazing pulmonologist early in my autoimmune “career” who said...if you go to a doc who poo poos/ makes light of anything you say or says anything patronizing, you don’t walk from that office, you RUN! Fantastic advise and I wouldn’t want to count how much I have used it.

Great advice @shani !

my husband is the person who is having trouble getting answers. He was diagnosed with MALT Lymphoma in 2018, in the duodenum. After 2 rounds of Chemotherapy (Rituxin alone, then with 2nd round (when it returned in the ileum) Rituxin and Bendamustine. His PET scans have been clear, last one was 12/2021) He has had gallbladder removed and was feeling pretty good for a while. Then the pains returned! He has had numerous sinus infections, an endoscopic sinus surgery and ear surgery! He has had CTs of chest abd and pelvis, plain abdominal films, CT enterography twice. His WBCs are high, his RBCs are low, his iron is low, he is tired all the time. He rarely feels like eating. CTs progress from5/2021 diverticula, 6/2021 mild inflammation of mesentery mild adenopathy LUQ no nodes. to 9/2021 mid abd misty mesentery numerous Lymph nodes to 10/2021 to wall thickening jejunum and inflammatory changes, prominent bowel loops, prominent retroperitoneal lymph nodes, prominent bowel loops, misty mesentery. He received antibiotics in Sept. they gave him antibiotics which did help. In Oct. he got prednisone 20mg one for 3 days. This helps to cut the abdominal pain and sleepless nights, but comes back every 2 to 3 weeks. He has had to call for refills, which they arent happy about giving him. AND they say there is nothing they can find is wrong. Something is wrong. Was this caused by the lymphoma? Was this caused by Chemo? We were told in communication from MAYO that he is not a candidate to be seen there. WHAT and HOW do we proceed? I feel sorry for him and we dont know what to do and which practice locally to request referral to............

Oh my goodness, @caringwife, your concern is tangible. You're clearly worried and at your wit's end.
While Mayo Clinic is a remarkable place, it is not the only place. Did you apply for an appointment at Mayo Clinic in Florida? Has your husband been seen at a large medical facility? May I ask what state you're in?

Thank you for response. We live in Aberdeen SD and use our Avera Health system, which is only in SD. Kens main oncologist was in Sioux Falls SD at the Avera system. The Dr here at home is a general surgeon, and one of the Drs that does endoscopies. He was the Dr. that diagnosed his Lymphoma back in 2018. He sees Ken now for the GI issues and told us that he knew Drs at Mayo clinic and said he sent Kens records over there. We asked the Sioux Falls oncologist if Ken should see gastroenterologists at the clinics in Sioux Falls, and he told us to go the route to Mayo. Kens original oncologist from Sioux Falls left for Tennessee fall of 2020, before he left, he suggested immunology/Rheumatology as a suggestion to go forward but am so unsure. Can you give us your opinion please? We feel like the people that we talk to here think Ken is overreacting, but sincerely he is not, he gets to the point that he has told me he just wants to give up. It is unbearable.

@caringwife, I believe you may have a couple of options.
1. If Ken's doctor is willing to pursue Mayo Clinic in Rochester, I would accept his offer for a physician referral to another relevant department. Immunology or rheumatology may be an option if the GI department cannot see him. At this point in time, several departments receive more requests than they have capacity. But it doesn't hurt to try.

2. You may also consider the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/about
The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. In South Dakota, Monument Health https://monument.health/ is a Mayo Clinic Care Network partner.

We thank you for this info. The Monument Health is the system in the Western part of our state. We just talked about this and may consider this option with our Dr. here to see if he would use this system. This week we are moving our son to Colorado Springs CO. and will try a little trip south for a week or so, depending on how Ken feels. I am the one that hates to leave home for a period of time as am so afraid Ken will have issues and we will be in places we aren't familiar with. I will keep this info. Thank you so much for the suggestions

I understand how you feel & sympathize. I consulted a rhumato & a gastro at Mayo Jacksonville & was impressed. They do work together & do try very hard to figure out what is going on. Be prepared to do a lot of blood tests to start as well as imagery such as Mri Cat scan etc. My experience both at Jacksonville & Rochester is that that they keep you until they have a diagnostic & then they suggest a course of treatment. You are treated with empathy & professionalism.. At least I was then 5 years ago. Wishing you all the best.

I have been told by 2 specialists that there is nothing they can do to restore my sight. I see my rheumatologist every 6 weeks and she always does blood work.