Long COVID providers/specialists?

@ksblonde, getting the denial letter is a gut punch. Mayo Clinic receives more requests, than spots available. There are a couple things you can try, however. First, if you submitted a self-referral, you might ask your neurologist who suggested that you need a multidisciplinary center of excellence to submit a physician referral on your behalf. Since you are willing to travel, you could apply at a different Mayo Clinic location. Mayo Clinic in Rochester, MN and Jacksonville, FL both treat long Covid. Appointment applications and intake are through General Internal Medicine.

I moved your post to this discussion where members share other options for care:
- Long COVID providers/specialists?https://connect.mayoclinic.org/discussion/long-covid-providersspecialists/

https://batemanhornecenter.org/clinical-care-guide/

@colleenyoung Thanks for your response. My Neurologist DID send in a referral for me. He is the one who sent it to Rochester because he said they have the best Neurology department for someone with my complex multi-system diagnoses. That is why I was shocked when I was denied. I also detailed out my entire 5 year history with all of my debilitating symptoms on the patient link that was sent to me from Rochester. I shouldn't have gotten my hopes up, but it was hard not too after losing my lifes work and suffering bedridden with this for 5 years. Living in a bed for the rest of my life is extremely devastating news. It will take a while for me to process this. I hope someone can suggest a way to get help. I need neurological testing that is not available in Kansas. Thanks for your time.

I just got my Mayo Clinic denial letter this morning. I am beyond devastated. It was my last hope on the horizon. I am a 54 year old woman and on my 5th year battling Post Covid Syndrome. I was healthy my whole life, I owned my own business for 32 years, never missed a day, even worked overtime while raising my kids. Until Covid. Now I am disabled, bedridden, and forgotten by friends and family. I am beyond thankful that my husband has stuck by me. Without him, I would need to be in a care home. I can no longer drive, do chores, go to the store, or spend quality time with my only grandchild. I am missing out on things that I can never get back. My big outings now are to Dr appts that offer no help or hope. I have been seeing nine specialists for most of these 5 years, but they each only look at their specialty. Many do not know much about or believe in long covid. They do not even care to research it. I have a long list of multi-system crossover diagnoses and nothing has helped. I have even had some treatments that have made things worse. My Neurologist said that my case is too complex, that many of my symptoms overlap specialties and diagnoses. He said that I needed a Multi-specialty Clinic to sort through and get to the bottom of my nightmare. I was optimistic and ready to go as soon as Mayo said to come. The denial letter said I should continue to follow up with my primary care and other doctors. When I read that part, I wanted to scream. It was like a punch in the gut. So here I am. I have no clue where to turn. Many leads have sent me to snake oil salesman just trying to take advantage of desperate people. I live in Kansas, I am willing to travel within the US. I am living on my disability, so out of pocket would not be ideal, but I have very good insurance coverage so far. Does anyone know what I could do, or what I should do, or where I can go now to get even a small piece of my life back? I am losing the last little bit of fight that I have left in me, so any information would be appreciated. Thanks in advance. God bless.

I hope you've found help by now; but if you're still looking, Dartmouth Medical Center in NH is the best!