Anyone been to Mayo Clinic(MN)

[jenandherboys]

Looks like my next option is probably Mayo Clinic in MN.  Just wondering if anyone has had any experiences there.  How difficult is it to get an appt?  Has anyone been there and have any experiences to share?

Just looking for any experiences or advice about how to proceed.

Thanks and be well!

Jen

[jenandherboys]

Thanks for the warnings-I don't think running to the Mayo in Rochester would be beneficial for me at this time.  As my GP puts it, "Most of medicine is pattern recognition, and right now, you don't fit any patterns..."  Obviously, if I don't fit the typical patterns, Mayo isn't likely to be helpful at this point.

My greatest concern is that there is some type of ongoing damage that might be slowed or stopped if I was diagnosed-whatever the diagnosis may be.

For now, I should be grateful that I am feeling (mostly) well right now and use this time to improve my overall health and wellbeing so that if/when another "episode" presents itself, I am better able to "weather the storm."

Thanks again to everyone!  Be well!

Jen

[Quixotic1]

We have discussed the Mayo many times and I have been shocked how uniformly dreadful people's experiences have been.  It seems that Mayo, Rochester is the worst.

The complaints include

Horrible arrogance

Expensive and being kicked out once your money is depleted.

I know of only one person (T-Lynn, youngatheart) who was diagnosed there and she felt she was well treated.

One person, subsequently diagnosed with PPMS was told, "Come back when you're in a wheelchair."

Refusal to accept anyone's testing and do ALL of the testing again.

My quarrel with them is their apparent drive to reduce the number of people diagnosed and treated for MS.  They used to advocate for withholding the MS Meds in those people who seemed to have mild disease.  This was shown to be a bad idea when repeated studies demonstrated that the meds are most effective the earlier they are used.  Also, we still have no good way of predicting who will have a mild course and whose will turn aggressive.

In the last couple years they abruptly changed the criteria for what constitutes a postive LP result.  The vast majority of the neurologic world accepts an elevated IgG Index and/or 2 or more O-Bands as a postive result.  This is in agreement with the McDonald Criteria.  The Mayo ignores the IgG Index and only acknowledges 4 or more O-Bands as a postive result.  I cannot find ANY study which supports this change.  If there was one, then it would be fine, but it appears to be arbitrary.

The Mayo seems to be trying to change the criteria by which MS is diagnosed to make it more difficult to diagnose and delay people from the diagnosis and treatment.

As with any large institution I'm sure there are smart, caring, and non-avaricious doctors practicing at the Mayo.

As mentioned above we have heard a couple good reports about a doctor at the Florida Mayo.  One dismal report from the Phoenix center, and multiple horrendous stories about Rochester.

My vote:

Hold the Mayo!

Quix

[parrotmama]

Hi Jen,

I went to Mayo and have nothing positive to say period. I now go to UW at Madison WI and am much happier and healthier.      Hugs,Laurie

[RedFlame]

Hi Jen,  I wouldn't do that.  I don't know your story, but Mayo is not going to help.  

good luck,  Red

[Lulu54]

jen,
It appears that Mayo is a driving force in redefining the criteria that allows anyone to be dx'd with MS.  It takes a slam-dunk case + a whole lot more to get an MS diagnosis from Mayo.

Many of our members have spent their own money to go to Mayo in search of answers, only to be sent home with more questions.

They seem to be pretty good at math, though.  They count everything!!! If your MRI doesn't show at least 9 lesions, you are probably out.  If your LP doesn't have at least 4 o-bands when everyone else says it takes only 3, you are probably out.   The standards to get a dx at Mayo is much, much tougher than anyplace else in the US.  

I am hard pressed to think of anyone here who was dx'd by Mayo in MN. Same goes for Mayo in AZ. But we do have one or two people who got their dx at Mayo in FL.  

The disappointment and non-diagnosid is so wide spread, we have the ongoing joke of Hold the Mayo!!!  

If you have other choices, I would heartily say to reconsider the decision.

good luck, Lulu

[MsWobbles]

Dear Jen,

I went.  Cannot recommend.  

WAF

[coach291]

But my MRI ordered by my regualr DR without contrast showed nothing. Then I did have a positive evoked potential test along with my symptoms that got me a DX of MS. Nero told me lessions where probably new and would have not been seen without contrast. Also said EV potentials was alot more accurate than spinal tap. Said I could could have one if I really wanted one but proabably a waste of pain and $$..I have now been on copaxone for 2 months and the heat still is bringing on new symptoms for me. I had a horrible weekend...I now know their is nothing else that can make my body feel like MS does..I am thankful for my neuro for loooking out side the box.

[lovemy6monkeys]

Jen, I've not been...but I have not heard good things :-( If you use the 'search this community' on the left upper side of the page you will find lots of threads about Mayo Clinic. (You can also use "hold the Mayo" as your search)

Sorry I'm not more help!