Hi Stephie. This has to be incredibly frustrating for you and I sure hope you’re able to get some answers soon.

If you’re not able to travel to a Mayo Campus, there are number of health facilities in the Mayo Clinic Care Network and hopefully one may be closer for you than Mayo itself. The medical facilities in this network meet the standard for quality of care set about by Mayo Clinic.

Here’s a link to the map of clinics affiliated with the program:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
I know it can be inconvenient and costly to travel. But when you have a complicated medical case, where you’ve exhausted local options in an effort to find treatment or at least a firm diagnosis, it might be worth considering a trip to Mayo. The closest to you looks like Jacksonville.
Would you be able to have someone go with you to watch your son if you traveled?

Good Day Stephiebush, I would highly recommend that you make a call to Mayo.; Then have all your medial records sent to the doctor or department for them for review and then make every effort you possibly can to meet with them. I travel from Charlotte, NC to Jacksonville Florida and do not regret for one moment that I do. These are the finest doctors, nurses and staff from around the world that are there to really help you! They are the ones that write the papers that other doctors read and study. You deserve the very best as does your 8yr old child not seeing you suffer. God Bless and give you all you need in order to heal. Daniel

I have my doctor at Mayo, Jacksonville and I am able to do follow up appointments by Telemedicine in between in person visits. My blood is drawn at a local lab and electronically sent to the doctor. Then we meet by phone or on the computer to go over lab results and next steps.

That cycle may be a way for you to use the resources at Mayo Jacksonville and not have to travel 6 hours by car each way to be treated there. The link that was sent of Mayo affiliated clinics by Lori , Volunteer mentor , shows an affiliated location in Baton Rouge , 2 hours from Mobile. It is Baton Rogue Clinic AMC, another option to receive Mayo expertise closer to where you live. Which ever you choose ask them how they manage follow up care for out of town patients and how often an in person appointment is necessary.

If you are able to go to Mayo Jacksonville, I highly recommend it because as others have noted , Mayo has the highest level of research on blood diseases and publications and all other resources are available on the beautiful Mayo campus including hotels and restaurants.

My Mayo doctor explained that every case is discussed weekly in a round table with many other doctors and they collaborate on the treatment options to pursue when there is the need for a meeting of the minds. All specialties are available to them and the complicated nature of your case calls for seeking out a universal approach to reaching a cause of your symptoms or a diagnosis.

Good Luck