Need a diagnosis - don't know where to go

Posted by Griffint @griffint, Jan 4, 2012

My wife has been really sick for nine months. Best specialists in our area, and we have seen many, don’t have a clue. Best guess is it is an unknown autoimmune disease. We want to participate in Mayo’s integrated care program to see if they can figure out what is really going on. Jacksonville is much closer, but have heard for difficult diagnosis, you should go to Rochester. Any thoughts on if this is true?

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I don’t know if it is but good luck to you. I hope they find out what is wrong with your wife.

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I have been sick & undiagnosed for 9 years. I even went to The Cleveland Clinic because it was closer. You want to go to Mayo in Rochester, Min. That’s where I’m headed. The other sites are satellites. The Mayo in Min. has everything. You might be able to follow up in Jacksonville. But if it is that important, you want the biggest & best. That’s the one in Min. Good luck & May God be with you in your journey!

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From my experiences with the many doctors and clinicis in my area, I would advise you to visit the Mayo as I have several friends who couldn’t get a diagnosis and/or satisfaction in their healthcare. The Mayo took the time with all 4 of my friends to listen and act upon, in a kind but serious manner, their health problems. I can’t help but think your wife would get the answers you both are deserving of.

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I went to the Jacksonville location for a very similar situation. They did help unravel some of the puzzle, even though not all. I do feel they did all that could be done. I am in the same boat. My local doctor believes it’s an unknown/unnamed autoimmune illness caused by my father’s exposure to agent orange. While I did not get all of the answers while I was there, I did get a great treatment plan which my local doctors have been following to at least get some of my life back. The fight isn’t over, and now that I have new symptoms, I’m considering going back when I get back on good insurance. Unfortunately, some illnesses just take time to show their ugly head. I honestly did not feel that I should have been at a different campus the entire time I was there. I chose to go to the Jacksonville location as I live in the Tampa Bay area and it’s pretty close. My doctors here kept saying go there and I listened. I’m learning to accept that I may only be able to get a treatment plan without a name. It’s tough. I wish your wife the best of luck no matter which campus she goes through. Searching for answers is truly the worst.

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I had one of the most difficult diagnosis there is. I had multiple symptoms and had been so many different places and struggled for years. I wrote a story on here about my visits to Mayo Clinic in Jacsonville if you want to read it. They had my health situation figured out quickly. They are fabulous. The thing I really liked about them was that each and every staff member and specialist I encountered was courteous caring and empathetic. It goes a long way when you are hurting confused and frustrated.

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I also have multiple symptoms. Where would I start with what doctor to see at Mayo?

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@graceland

I also have multiple symptoms. Where would I start with what doctor to see at Mayo?

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@graceland , look at the following post, it might help you with how to start the process of requesting an appointment and with who.
https://connect.mayoclinic.org/discussion/the-right-doctor/
Laurie

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@griffint My son and I both have multiple forms of Myeloma. It was working with genetic labs, including Nebula, Sequencing.com, Ambry, GeneDx and others which finally put us on the right track. Getting the proper diagnosis is not easy, but it can be done if you push…push….push….! At one time I tried to go to Rochester, but it would have cost me about $10,000 to go there for the diagnosis. Now, most good insurance will cover the diagnostic work if you have insurance. Anyway, someone at Rochester will talk you through the route if you wish. Now, for less than $1,000, you can get a 100% sequencing, and there is more help along the way. You just need to have your primary on your side. My own primary is afraid he cannot cure everything which shows up, so I am on my own until now. oldkarl

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You might inquire about whether they accept your insurance. Many centers have been declining patients with Medicare Advantage insurance coverage especially if they are out of state. I do not know if this is the case with Mayo but you might ask. Also various centers have not been able to negotiate with certain health plans and so that can also be an obstacle.
Just a thought.

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