Mayo Clinic?

[watson01]

Has anyone from the MS forum ever seek treatment for their MS at the Mayo Clinic?  If so, how was your as your experience with physicians from the clinic?  I am considering driving up to Mayo at some point if my neurologist in town can't definatively diagnosis me.

[whyMS]

I live in Rochester  and have MS so get all my treatment at the clinic and have needed to be seen in a vast array of specialties. Most are excellent but there are a few "bad eggs". The MS doctors are some of the worst. Very dismissive and quick to jump to conclusions has been my experience until I asked to change doctors and I found Dr. Pirko to be wonderful, he showed me what I had been missing.  The other doctors may be research doctors who are not wanting to be bothered by patients. It was very stressful dealing with a new diagnosis of MS and a rude doctor at the same time.

[medicinewoman40]

We just got back from the Mayo Clinic-not for MS.  Was searching for a site of people who had a bad experience there and found this site.  We don't know what is wrong with my husband but he has a wide array of syptoms and evidently ends up with an infection somewhere in his body.  Been to numerous places and no one can figure it out.  we have been to the Mayo three times and been treated like we're nuts everytime.  Still no answers-they like to latch on to some aspect of your health-in his case, the first time sleep apnea, and blame it on that or that he smokes.  This last time, it was that he has had heart problems and they wanted to rerun all the same tests his cardiologist had just run a month earlier.  We walked away with a $5500 bill and no answers.  The doctor was ok-it was the patient services people that were-excuse my french-assholes when he tried to stand up for himself and ask why they needed to run these when he had just had them done and we had the results with us.  The doctor never looked at any of his medical records we brought with us.  The idiot in patient services said that they can't rely on what someone else says.  He just gave us a big run around. I know they have helped thousands but we certainly haven't seen it.  It is probably worth it once but don't keep going back it you don't find answers the first time or if you don't have good insurance.  Also we stayed at the Courtsey Inn-about $50 a nite-clean but nothing fancy about it.  Have a shuttle to the Clinic and close to several restuarants, also microwave and frig in the room. At the intersection of Hwys 14 & 52.   You will be at the clinic all day anyway.  As previously stated you should plan on at least a week's stay.  Wish you good luck

medicinewoman40

[Sunnytoday]

Hi, I'd just like to add a note here, my cousin was treated for Leukemia at the main Mayo clinic in MN, and was there most of 5 years, and was treated with respect and thoroughness and is now in remission, while another clinic (which is well respected) totally botched her diagnosis and when she arrived at Mayo it was touch and go and they didn't know if she'd even make it for many months.

I think from my family's experience that they are good at some areas and perhaps not so good in other's- for example: they do a very good job of treating some types of cancers.

~Sunnytoday~

[kate1975]

I have made 2 trips to mayo that were not good. The first one was after my Sed rate was found to be high. 70-120, There they told me it was only from having a baby...hmm, that was 12 years ago and its still 70. The next visit was with my son who the Dermatologist recommended I take him  for a 2nd opinion.where we were given the wrong Dx. Ended back up here with the same Derm and he was able to  heal it up. He had fusarium growing in his foot which is a mold that is found in corn and dirt. He is severely allergic to molds and that was his reaction. So no, I dont have confidence in Mayo.

[Quixotic1]

We have only heard from a small fraction of the people here on this board who have been devastated by their experience at the Mayo.  Perhaps the Mayo is changing and moving more into step with the rest of the field of Neurology, I have no way of knowing.  Maybe they are getting their act together or maybe it really does depend on who you see.

We also have at least two people here on the board who were treated callously and dismissively and just told to "come back when they got worse."  Both of these people had PPMS, which is notoriously difficult to diagnose, but you would expect Mayo (if it is the Best of the Best) to be better at this.  Both people were diagnosed by others after leaving the Mayo.

Again, I am glad you are here to describe so eloquently how well you were treated and how thorough you felt their evaluation of you was.  Thank you for your input.  I hope people who are considering the Mayo will talk to you and get your whole story.

I encourage all who have experience with the Mayo Clinic to post their experiences here.  Please tell us which facility you went to and what was good and bad about your experience.

Quix

[Quixotic1]

It is clear to me that at any large institution the quality of the care can vary.  We, here on the forum, have heard far more horror stories from the Mayo (Rochester) than we have heard good outcomes.  In general, the attitude reported has been brusque, condescending and dismissive.  I am sure it depends on who the lead physician is.

MB - I can vouch for the attitude of delaying or withholding treatment for those who appear to have a benign course, but it it may be changing in the face of studies showing that this is not a wise approach.  Two of the Rochester MS researchers (I think, Pittock and Weinshenker) have been very vocal about the number of people they believe would be better off not taking a DMD.  They have published and spoken widely (worldwide) on this philosophy.  They clearly are in the minority in this belief, but because of Mayo's great reputation, they have influenced a great many physicians out in practice - to the detriment of MS patients.  We have people coming through here frequently who quote that Mayo philosophy from their own neurologists.  If you google "Mayo Weinshenker Benign MS" you will find some of his writings on the subject.

I personally have problems with the notion of prospectively approaching ANYONE as if they have Benign MS.  I believe that is something that can be ascertained only after 20 years or more, or at the end of one's life.  Studies analyzing the ultimate outcome of people labeled as Benign are showing that a good 50% will have major disability by 20 years as measured in either unassisted mobility or cognitive function.  This is disability that "may" have been altered had they been given access to to DMDs.  Access can include those who were discouraged from taking a DMD by the way the "risks and benefits" were explained to them.  If Weinshenker was explaining the risks and benefits, many people would choose not to use them.  

Again, this reluctance to use a DMD does not apply to someone with obvious aggressive disease or with early disability.

I have also heard from people who were not given this credo by the Mayo doctors they have seen, so the whole institution clearly does not hold to this.  But, when I did my research on the notion of "Benign MS" I ran across the Mayo beliefs frequently.  For that reason, I would not personally recommend people spend the big bucks on that center.  It is too much of a cr*pshoot as to which philosophy you will encounter.

Quix

[goofysmom1]

Thank you for posting your experience with the Mayo clinic.  I feel badly for those who had a negative experience there - for they didn't get the care they deserve.  I hope that my experience there will be beneficial for me.  

Thank you for your honest perspective on how we all need to continue to push for answers.  I have found that sometimes I am frozen with frustration - not sure what I am supposed to do next - so I "take a break from the doctor merry go round" and do nothing for a bit.  Then a new symptom will pop up - and I get back on the merry go round, only to get frustrated again...A common story I know for those here looking for answers.

That frustration is what led me to contact the Mayo clinic in the first place....and I really hope that I can find some answers there.

I am so glad to hear that you are getting back to healthy!

Chrisy

[mb2815]

I would encourage you to re-educate on the Mayo clinic philosophy for treating early MS.  Have you personally heard this philosophy.  The way it was explained was that they educate the patient and the ultimate decision is up to them. They do not force treatment on patients - but simply provide them the tools necessary to make an educated decision.  It was explained to me the benefits as well as the negatives for treatment.  I spent time with the MS specialist as well as the MS nurse educator to make sure I knew all of my options.

It is like buying an insurance policy.  You hope you never need to cash it in but it gives you a sense of security.  The Mayo education goes over all of the statistical studies and the benefits of treatment.  The main thing they want you to be educated as a patient and at the same time realize that they are not in the drug companies back pocket.  I found my options to be very open and honest and not at all discouraging.   I left confident with my choice to begin therapy and knowing that they supported my decision.  I am sorry you have not had the opportunity to see the benefits the Mayo Clinic provided myself and my family.

[mb2815]

I am really sad to see so many negative experiences with the Mayo Clinic - which facility did you go to?  I began my journey at the Mayo Clinic (Rochester MN) in May and am so very grateful for them.  This was a 9 hour drive for me as well and they provided so many answers for me.  I have not posted in a while but if you look at my previous posts you will see.  In the last two months I have been diagnosed with MS, Epilepsy and Celiac disease.  My symptoms started in 2000 and my neurologist was not sure and things were allowed to progress.  The MS lesions are located on my temporal lobe which have increased to a size large enough to now cause me seizures.  I truly believe if I would have sought help sooner at the Mayo Clinic I would not be in the situation I am in.  I believe if I would have started treatment I would not have the diagnoses or at least so soon of epilepsy.  I am now unable to drive and have to take seizure medications as well.

I would say really consider the Mayo Clinic.  The only thing I caution is they tell you to anticipate a stay of 3 days to one week.  I ended up staying 3 weeks and returning for a week followup.  The service I recieived from the physicians at the Mayo Clinic was outstanding.  I went from feeling like a hypochondriac to finally having answers and a way to manage my life.  

We are the masters of our own health.  If you allow people to treat you curtly that is partly your fault.  It is necessary to speak up - if you don't feel you are getting the right answers or the right attention stand up for yourself and dont back down.  The Mayo is very proactive and if you are uncomfortable with a physician they will consult with another.  I dont know if I am allowed to tell physician names but the physician I had was the head MS specialist and was very patient and helpful with me.  I am now on the right path and returning back to be as healthy as possible.  Given the right tools it is a very manageable disease.  I encourage to reconsider and really think about what is right for you and your family.  I let my hometown physicians dictate my care for the last 8 years and I only ended up worse.  My hometown physician is very caring but was not specialized enough to realize what was going on.  I am very thankful for the Mayo - without them I am not sure where I would be.  

Please contact me if you have any questions - I would be glad to help you.

[watson01]

I just wanted to thank everyone who posted in this thread so far.  I really appreciate everyone being so kind to share your experiences of the Mayo Clinic.  However, I am saddened to hear that so many of you have had such a horrible experiences with physician's from Mayo.  I'm really glad I posted this on the forum before I decided to drive 9 hours to get there and spend more money.  I'm left to wonder if anyone out there in the Forum has had any good experiences with the clinic?

[goofysmom1]

Interesting to hear how things went for you at Mayo.  I guess I need to find a new primary physician - so that I can get a referral to a neurologist at Swedish?  I have tried calling to make an appointment directly with a neurologist and they won't take my appointment unless there is a referral from a primary doctor.  I just dread going through the whole speel again.....

Chrisy

[monotreme]

Mayo is a complete waste of time and money.  They saw that Craig couldn't lift his legs when lying flat and said to come back when he gets worse.  Every doctor at Mayo that Craig encountered was mean and curt and just plain too egotistical.

Goofysmom1....have you tried Swedish hospital?  They at least have good neuro-radiologists, have a 3T brain MRI machine, and picked up Craig's early brain changes.  I would try them before going all the way to Mayo.

Elaine

[goofysmom1]

I am so saddened to hear this about Mayo.  I have just been accepted as a patient there - and am on a waiting list to be seen.  Hopefully in the next couple of months.  I am so fed up with the doctors that I have been seeing in my community.  I thought why not go somewhere like Mayo.  I was so happy when I was told that they would take my case.  


Chrisy
(yet another waiting for a diagnosis)

[essdipity]

The posts above this one reflect many of our members' experience with Mayo. I'm sure some have been pleased but I can't recall any.

Aside from "attitude," the big drawback of Mayo is their philosophy regarding treating MS. They make no secret of the fact that they generally don't believe in treating early MS, or in treating those with light symptoms (thus far). They are often reluctant even to diagnose, even when other doctors have been convinced. The net net of this is that people who need a DMD don't get it prescribed by Mayo.

This stance runs counter to the beliefs of mainstream and forward-thinking neuros. The Health Pages explain in detail what the current diagnostic criteria are and when a DMD is indicated. This is decidedly NOT the Mayo way of doing things.

ess

[julia111]

My experience at Mayo was similar to what mom9335 posted.  

In my case, it was the Rheumatologist who was curt - took phone calls during my 30 minute visit - and since he pulled up my records from my visit 12 years ago which resulted in a dx of Fibromyalgia, he did not care to hear about what I was experiencing now.

The Neurologist that he referred me to (who he called his "buddy") seemed nice, but I think he was really just supporting the Fibromyalgia dx that the Rheumie had "re"diagnosed me with.

Despite the debilitating condition I was in and the long list of "subjective" neurological symptoms he didn't seem too concerned about looking further for an alternate cause of my problems.

Also, he knew my Brain MRI was done on a weak (.25 Tesla) Open Machine without contrast and told me that I had  "beautiful brain!"

Basically, their attitude was, "Come back when you get worse!"

Good luck,

Julia  

[mom9335]

My son went for a second opinion early after he had been diagnosed at U of MI in Ann Arbor. He found the doctor at Mayo to be preoccupied, curt, not prepared (he had not read any of the medical records my son had sent him), the examination cursory, and the opinion the same as U of MI.  The Doctor made his pronouncement after a brief 1/2 hour visit during which time he took phone calls, and left the room. He also informed him that he would be leaving the country, and a different doctor would see him for the rest of the visit.And, the final word was that only after a year would anyone really know what the  final diagnosis would be.

My son was supposed to stay for four days, at very great expense, but left the next day in disgust.  It seems that if you have an MS. designated clinic at a nearby hospital or university, you might do just as well if not better for diagnosis.  

My son has been very impressed with the U of MI MS clinic at Ann Arbor.  Good luck in your quest, and I hope you do NOT have MS.  

[michael1028]

    I have considered it. I have gone as far as to request info from them. The main reason that I have not gone is that I am afraid of spending all of that money and still having no dx. I have told myself that when I get some of my current med bills paid I will make that appointment.
    If you choose to seek treatment there, I wish you luck.
God Bless,
Mike