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1318483 tn?1318347182

MN Mayo Clinic


On another post I was told that going to the Mayo Clinic may not be a good route to go for me.

My neuro is trying to send me there.  I am undiagnosed.  Symptoms for 6 years.  

Any opinions out there on the May?

Thanks,
Addi
11 Responses
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1318483 tn?1318347182

Thank you so much for sharing your experiences with Mayo with me.  

I have decided to decline going.  Partially because I do not want to go all that way to find the same answers I am finding here....and have those answers inhibit me from continued search for dx.  The other part is the money (thanks Lois for that info!).  It really would not be feasible for me to go there.  

On the other hand, my neuro and PCP faxed in the paperwork to UCLA yesterday.  I am suppose to call them today to set up an appointment.

I have researched the UCLA Neuro Dept. and feel very confident and comfortable with my decision to go there.  

Thanks again and I sure am sorry to you all had negative experiences with the Mayo.  ;0(

Addi
Helpful - 1
867582 tn?1311627397
I concur with all the above.  I went to Mayo, main facility, in Minnesota.  Sounds like I had the same dismissive, distant MD described by Kingusc.  But first I was some wet-behind-the-ears-new-student-MD's learning experience.  They had me fill out a very detailed questionnaire on my medical history which impressed me with its thoroughness, but then they never seemed to ever actually read what I had written because I was asked to complete additional questionnaires asking the same things over and over again.  I do, however, believe their radiologist was excellent.  Needless to say, I left Mayo with NO answers, no better off than when I came and feeling somewhat blown off.  Of note, they have even taken away MS diagnoses from established MSers!
My impression is that they are reluctant to diagnose neurologically.

When you walk into the impressive lobby of the main Mayo, it is a marbled Taj Mahal, a palace, a religious shrine built to our latest cultural deity:  American Medicine.  Prominent are the many, many cashiers and the cordoned lines of people paying . . .

In answer to your question about going to Mayo Clinic, from experience I say, "Hold the Mayo!"

WAF
Helpful - 1
1318483 tn?1318347182

Thanks, ess and Julie.  I will do the search on Hold the Mayo.

Finances are an issue for me.  My PCP is already starting the procedure to get me a referral to UCLA.  But, then when I saw neuro Thursday, he said Mayo.

I have an appointment with PCP Wednesday and had plans on talking to him about this issue.  Now I have some more info for him, thanks to you guys.

Thanks again~
Addi
Helpful - 1
Avatar universal
Hi. There are loads of opinions, almost all negative. Try using 'Search this Community' to find posts about the Mayo, especially 'Hold the Mayo.'

If finances are a part of your equation, don't go.

ess
Helpful - 1
Avatar universal
Yes UCLA is good.  Local universitys are just as good as mayo.  Dont believe the marketing.
Helpful - 0
667078 tn?1316000935
UCLA is very good. That is a fine choice.

Alex
Helpful - 0
147426 tn?1317265632
One of our members (Monotreme) said they required a huge amount of money upfront depending on the type of work up.  In their case it was $15,000.  Each test and consult was deducted from this and when it was gone they would go no farther - Out the Door if no more money deposited.  

Craig was told, "We don't know what you have.  Come back when you are in a wheelchair"

He has PPMS.  They are very bitter about the experience.

Grannyhotwheels (Carol) had an even worse experience and paid them her life savings, without any diagnosis nor empathy.  She has PPMS.

So, to go along with the avariciousness and the arrogance, they don't have a very good track record in our combined experience.

They did right by T-Lynn (Young at Heart).

I, personally, believe that they have an agenda to reduce the number of people diagnosed with MS.  This is a soapbox of mine.  You can all be thankful I'm not up to writing about it.

Q
Helpful - 0
1312898 tn?1314568133
I don't know anything about Mayo except for what I have heard here.  

Is there a particular reason that he wants you there---a specific doctor or something?

As far as financial burden--there is a non-profit organization that will provide transportation for medical patients for free.  Angel Flight is one of the organizations

I will be thinking of you tomorrow--
Helpful - 0
147426 tn?1317265632
DITTO - We have heard mostly horror stories from Mayo - Lot's of money out of pocket, few answers, rigid and not in keeping with mainstream recommendations with regard to MS Diagnosis.  Arrogant and dismissive.  Once they give the "Not MS" pronouncement, few docs will go against them.

We have heard from a few that were well treated.

Hold the Mayo!

IMNTHO (In my never too humble opinion)

Quix
Helpful - 0
1135896 tn?1278441715
I hope this hasn't reached you too late.  I very rarely post, and I am in limboland with respect to a diagnosis.  

I went to the Mayo Clinic in MN a year ago, and though most of the appointments and tests were terrific, I can confirm what Julie and ess said.  While the doctors may be brilliant and do important work, the neuro I was assigned was arrogant, distant, and totally dismissive of most of my symptoms.  

I've struggled with neuros so far, and have gone through the "it is all in your head" routine and much of the same stuff everybody else has heard on this forum.  So my advice is tainted.  But if you can get into UCLA, I'd say that is far better than Mayo.  Particularly from Lompoc.  

Good luck.  

Dave
Helpful - 0
559187 tn?1330782856
I agree with Ess and so will many others here who have had first hand experience with Mayo and MS diagnosis. They are definnitley lesion counters and if you don't have all 9 brain lesions, or more than 4 oligoclonal bands in your spinal fluid, then you will not be seriously considered an having MS.

I have not gone to Mayo myself, but my husband went there (Rochester) when he had an undiagnosed rheumatology issue.  The Mayo did a lot of tests and just shook their head at the end.  No answers and this was the famous Mayo Clinic.  Fortunately, once we moved away from Minnesota, his swelling joints resolved on their own.  

Again, like Ess said, if finances are an issue then you might as well stay where you are.   You might ask your doctor if he can give you a different referral that your insurance will pay for.

Julie
Helpful - 0
1 Comments
Find the nearest university with a good neuro rating will be just as good.  
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