@leigho55 I know the whole process can be frustrating. I'm sorry you might feel bereft, or even excluded by some docs.
After more than a year of pain, I spoke with a man in a wheelchair. I explained to him how I just woke up November 8th, 2015, and - for no reason - could no longer walk. The man in the wheelchair explained to me, "That is how it happens for all of us." For some it's an accident that changes one's life. For others, like me, and perhaps like you, it occurs, "For no apparent reason." It just happens.
The key is what you do on the next day, and the next month, and the year(s) or more that follow. For me, I refuse the wheelchair and throw myself around on a pair of forearm crutches. Sometimes the pain is overwhelming. But then sometimes I can meditate myself into a "numb state" where I feel almost "whole" - But this new "wholeness" is not one that is free of pain. It is just my newly accommodated reality. Yes, it "stucks." Really badly. But it's also just my life now. So I just keep plugging.
In the past 15 years I've been through both Mayo in Rochester, and this past Autumn through Cleveland Clinic for a related, though different issue around the rectalis portion of the pelvic floor.
The journey always continues until we can't. It's a choice really - to go on. But not going forward is its own kind of admission that, "Some type of life" is not worth living.
I refuse to accept that. "Failing" is not a legacy I want to proclaim to others. I choose to fight - to fight hard in my own way. It may be slow, but it is my speed. I've readjusted my own perception a lot.
My understanding, and my experience with Mayo Rochester is all you need is CALL to make an appointment. If they require a referral to the Motility / Pelvice Floor Dysfunction Specialist (Dr. Adil Bharucha), then pretty much any type of physician - I usually use my current internist - can get you to Mayo Rochester. All you need to take is (basically) every medical file you can print out. Then you just have to wait for Dr. Adil Bhuracha to have an open "clinic day" in the foreseable future, and get the appointment in Rochester scheduled. I always ask for cancellations, or for "first available." Then I bend my whole life toward making that date.
There is financial aid available - when you call the number I've listed below ask them how to get started on that if you need it.
Although the different "Mayo Outlets" share data to a certain extent, I would take issue with "Needing to start over," through the Florida Mayo 'before' you can go to Rochester.
You can go where YOU want. You're in charge. You know your body. And you know what you need to do. Okay?
Just get your internist to fill out the form to get in to see Adil Bharucha, M.D., at Mayo Rochester. It will be worth the trip.
And no one can 'tell you' that you can't go somewhere to see another physician.
I cannot urge you strongly enough to seek this path for yourself and go to see Dr. Bharucha.
I'm also tagging past members @sad10514, @heidiren, @mm92599 in case they have any further insights.
You can call or request an appointment online here: http://mayocl.in/1mtmR63, for Mayo Clinic, Rochester, MN.
I got this number straight off the Mayo Rochester Appointments page online: 507-538-3270.
This next text is copied from the Mayo Rochester home page:
"Anyone can request an appointment at Mayo Clinic.
If a physician referral is required, our appointment staff will advise you. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need. You may make an appointment at Mayo Clinic in several ways: Call [this is the easiest...'hew]. Appointment Information Desk: 507-538-3270; TDD service for the hearing impaired: 507-281-9786; 7 a.m. to 6 p.m. Central time, Monday through Friday."
@leigho55, Monday, 1/16/2017 might be a holiday (MLK) but if not then, please call them this Tuesday.
Pain is real. I feel strongly for your suffering. I've been in 8/10 level pain for 422 days. Trust me, I know how ennervating, maddening, even horrifying it is to live in constant pain. But at least by changing "Mayo's" (from FL to MN) you can get someone in Dr. Adil Bharucha who understands the pelvice floor and can perhaps start you on a different, more enlightened path. Great luck. Take care, Hew.

Another great response @hew thank you. A lot to think about and absorb. I wish I could see this Dr. tomorrow. Pretty sure this may not happen anytime soon. Have to spend more big bucks at Mayo here first to convince them I need a Dr. in Rochester. I will let you know what happens once I can get into Mayo here. May take months. Sincere thanks I mean it. Thank you for taking the time to listen.

Hi agree Leigh. @hew's message to you is remarkable in many ways. Hew, your attitude enlightens us all.

The information that Hew shared about getting an appointment at Mayo Clinic is accurate. You can call the Rochester campus directly and you should not have to "start over" again.

Can you explain further what you meant by "Its a big ordeal for me to get to mayo in Rochester they wont see me until I start all over here at Mayo in Jacksonville." I might not be interpreting the issue correctly.

Hi Colleen. As far as expense goes to get to Rochester to see this specialist it is huge for me. Yes an ordeal. My primary sent all my records to Rochester and they emailed him back saying I had to go to mayo here in Jacksonville first and see an Internal medicine Dr. So to me that sounds like starting all over going back 14 months. I had to leave my job back in July as I have mentioned before so money is very limited and I am nervous this medical issue is not being properly looked at here where I live. I would jump on a plane tomorrow if I knew this Dr. could tell me what possibly happened to have caused this progressing pain. So it is an ordeal for me to get there when I am financially stuck. You cannot get medical treatment without being able to pay for it so in a nutshell this is my ordeal. It a huge mess literally. I hope this makes a bit more sense. Thank you.

Thanks for the further explanation Leigh. Do you live close to Jacksonville?
I can only make assumptions, but it is likely that our physician experts in Rochester reviewed your records. Their review may have led them to determine that we have the expertise in Jacksonville to treat you. It is our goal to provide the best care each patient needs, however we do not want to have you incur additional costs for evaluation or travel.
I suggest that you call Mayo Clinic (Rochester or Jacksonville) http://mayocl.in/1mtmR63 and ask them to explain the process to you, and why they suggest Jacksonville over Rochester.

<br><br><br><br><br><br><br>Do you get the Pain News Network, newsletter?  The recent email from them indicates that "big brother" is going to push additional regulations that will make it even harder for chronic pain suffers to get help.<br><br><br>The people who run the Pain New Network are asking for input from suffers and I would like to make the  chronic pain group at Mayo's of this, but I do not want to create a conflict.  Do you think it would be appropriate to put this before the chronic pain<br> group?<br><br><br>You might try going to the Pain News Network.org  I have tried to copy your email address to send to send it and can't or don't know how and I can not find their address.  I am not a good computer user, I will be the first to admit that.<br><br><br>Please try to find the Pain News Network site and read their latest email.  I feel the more that they do in DC the more people will be hurt and will die.  19lin<br><br><br><br><br>

Out of curiosity @19lin who is "big brother"? I would join or talk to anyone about this medical issue. I am not getting any answers from about seven different Doctor's here in Jacksonville and I obviously am very upset after 14 months of getting no where. I do not get the Pain News newsletter. Is that through mayo connect? I will see if I can find this. Thank you for taking interest in my messages here on Mayo connect. I understand that I am under the "chronic pain" group now because nothing is healing or getting better. I am getting worse and its scaring me more and more. I wonder constantly why no one is telling me what could of possibly happened to me. Just even a thought. A suggestion. Nothing. Just hearing I can't do anymore for you and I don't know what it is. I don't by that. Anyways, yes I have no problem sharing anything I have been through. Someone has to take an interest somewhere. Now my lower back pain is back and pain back in my right knee that had been gone for almost a yr. My situation is strange and I need someone to put two and two together and help me. Nerve and muscle damage all rolled into one. Thank you for reaching out!