Hold the Mayo.....

Quix and all,  I attended a presentation tonight sponsored by Shared Solutions, and they had two Neuros speak on advances in MS and therapy treatments.  I want to share this observation while it is fresh in my mind.

During the Q&A, the one neuro made a comment about some patients having benign MS.  Well, you can imagine what that did to the hackles on my neck ....

My opportunity to ask a question came and I asked how he could in good conscience ever label anyone with MS without seeing them on the autopsy table.  He corrected his languge, and did not mean to use benign as a diagnosis, but rather as a state of the disease.  

I told them we have many people in our online MS forum who have been told they have benign MS as a diagnosis, and they are not getting the drugs for their CIS or MS because of these doctors not wanting to commit the resources of DMD's to them.

The other neuro in the pair immediately spoke, and without missing a beat, said - and I swear this is what he said -
"did those doctors train at Mayo?"  and then sort of chuckled  like he was telling an inside joke.  He then explained to everyone that the doctors trained at Mayo use a totally different standard to determine MS, are the only ones he knows that use "benign MS" as a diagnosis, and they are unreasonable about their o-band numbers as well.

So there you have it folks - from my ears to your eyes. We're not the only ones unhappy with the way Mayo doctors view MS.

be well,
Lulu

PS the talks were lengthy but full of tons of good thoughts and information that I will share with you once I get some sleep.  

[biowham]

Lulu--you go GET 'em, girl. Wow. Nice question.

Looking forward to more of your info.

Bio

[Lulu54]

B- it struck me as very odd that he would use the label BENIGN because he had just spent about 30 minutes reviewing CIS and the treatment for CIS and how important it is to be on drugs at the first sign of anything that could be MS.  Fortunately he really didn't mean benign the way Mayo means benign  (meaninig you're SOL!) . I have lots of notes about CIS statistics to share too.


L

[doublevision1]

Oh dear.......how very strange Mayo's approach to MS seems to be, how out of step they seem compared with the other leading MS centres not to mention the curent literature.  Such an esteemed facility is in so many other areas of medicine.  Very curious.

And interesting that on the other hand, they are leaders in the study of NMO, having discovered the key antibody crucial for diagnosis and differentiating from RRMS, have written and delievered tons of papers on the subject, and are pro treating NMO as early as possible with immunosuppressants and/or plasma exchange.  I guess they don't believe there is such a thing as benign NMO comparable to 'benign' MS. Which I suppose from what I've learned about NMO makes sense, there is definitely nothing benign about it.

My neuro said the same thing as others have, about so-called 'benign' MS....benign is a term that can only be used in retrospective; there is no way to predict a benign course.  Treat early with DMD's to reduce relapses and hopefully minimize neurological impairment and slow disease progression.

I'm curious whether anyone here with definitive RRMS is currently being treated at Mayo, and what your experience has been?

[Nancy T]

Maybe that presentation would have been more appropriately scheduled for approximately two weeks hence: Sinko de Mayo!

Thanks for the report, Lulu. Apparently, the neuro I saw in 2000 took up their cause early (though he didn't train there), telling me that "whatever" I had was so low-level that he "wouldn't treat it anyway."

Nancy

[Ufrustrated2]

thanks for that information.

looks like the Mayonaise doctors are quite out of touch.  and I had thought that place was some kind of gold standard?  guess not.

is this the least understood mystery illness amongst doctors? or is this mystery illness costly to treat thus if one isn't in a semi-coma wheelchair state, then doctors tell you nothing is wrong with you and shoo you on out of the way due to too much work and too much money?

i didn't think MS was ever benign until one is dead, yes?

[doublevision1]

Sinko de Mayo....very clever!!  :)

[Nancy T]

I wonder if the Mayo approach is generally gaining ground among neurologists, or not? I wonder if anyone has polled neurologists about this.

It seems that what is medical gospel (in any field) can change completely in the course of a decade or even a year (or immediately after publication of some nice big study). Or, new ideas gain ground and then eventually are rejected entirely. It will be interesting to see where this goes.

(Although I don't know how they would know whether their approach is "correct," either in terms of money saved or patients' quality of life, without some giant study lasting decades.)

[Nancy T]

Oh, I didn't think that up myself; it's been around here (Oregon) for a long time; I just applied it to a somewhat different situation. :)

[Quixotic1]

Now, honestly Lulu, did you make that up just to get on my good side?  that kind of stuff has me doing the Snoopy dance, cause it is confirmation that I am not leading anyone astray.

General doctors in practice are certainly swayed by the actions and doctrine of the Mayo.  After all, that is one of the main places they think of for the ultimate opinion.  I find it sooooo harmful to us all.

We need to bookmark this thread and the latest one in which I did my lament and condemnation of the Mayo's view of diagnosing and treating MS as an ideological stance.  That way we can bring them up when someone asks us about going to Mayo.  

SINKO DE MAYO!!!!  

OH, BAN THE FOUR O-BANDS!!!

NEIN!!  NEIN!!  NEIN ON BENIGN!!!

Quix

[Quixotic1]

Does anybody know how to reduce a dislocated shoulder from patting oneself on the back?

[BOK2Bjan]

I look forward to hearing more info from you Lulu - love to hear new stuff.  I'm not up to speaking on just how retarded the Mayo stance is on diagnostic criteria or treatment paradigms, but I'll take everyone's word for them being less than patient-friendly concerning these issues!!  But, I don't have a problem with the term "benign" -with a caveat - of course WE all know no one can say anyone's MS will have a benign course, but they can say that any given patient is CURRENTLY having a benign form.  They just need to make it clear that it could change and often does without warning to a more virulent form.  The range of clinical expression of our "delightful condition" is so broad, that some really do have a benign course.  I have a friend from college who has MS, but has only had a few episodes of balance issues that totally disappear. Of course, no one knows what the future holds, but so far (20 years) its been what anyone, and she, would call benign.  It's just hard for us to hear docs who are so insensitive and appear so clueless use the term I think.  And for all I know, they call some cases benign that the patients don't feel are at all - even currently.

Anyway, thought I'd add my 2 cents.  And maybe I'm getting more cynical the more diseases I face, but I'm getting more and more disappointed with most doctors.  Even the one I've loved for over 30 years really isn't doing anything for me.  He's just throwing drugs at symptoms and mostly looks at me and says "I really don't know Jan" and "I'm so sorry, you know I'd do anything if I just knew what to do".  Sigh - I need a doctor who knows what to do!!!!!!!

Blessings to my fellow frustrated frequently frowning fellowship of friends.  Maybe I'm the only member of that group, come to think of it.

Jan

[Sarahsmom46]

This was truly refreshing to hear about.  Thansk for sharing.

Julie

[Lulu54]

It does my heart good to hear the *experts* talk in the same vein that we do - not just on the subject of Mayo, but other topics too.  It is a great affirmation of how intelligent my forum family here really is about this MiSerable disease. That's a pat on the back for all of you.

- Lu

[goofysmom1]

Interesting... Can't wait to hear what you learned there!  I went to the Mayo clinic in January hoping for the "expert" opinion & maybe an answer to my health issues (whatever the cause, MS or not)...I got "I can't guarantee that we can help you" and then "I think there is something going on, but until it shows up on a test, there isn't anything I can do", and "Your symptoms are symptoms that people experience all the time" and "You may be being too aware of your symptoms"...

That was it.  Lots of money spent and nothing.  

Now my GI consult was fantastic - I was impressed with the 2 GI docs and everyone in the GI department.

I am now afraid to search out another doctor - for fear that they will see that I have been to Mayo and that there can't be anything really wrong with me because they didn't find anything at the Mayo clinic.

I went there because they are supposed to be the best...

Chrisy

[Rena705]

Thanks for the info Lulu...verrry interesting!  

In all fairness though the Mayo is not the only place on this fair planet of ours that uses the "benign MS" label.  It has consistently been used in my case even though I have been diagnosed with paratrigeminal neuralgia secondary to my MS diagnosis and been treated with IV steroids for it.  I also have been told that I have "underlying symptoms" of MS (whatever the he** that is supposed to mean) and been treated with several meds for pain and muscle spasms but my disease is still deemed "in-active". I was last told that I have SPMS and I wouldn't be put on the DMD's until my symptoms change indicating a change in activity of the disease.  I am thinking that there are a few Canadian Neuros that should go down with the ship as well...perhaps Sinko de Neuro might be more suitable?

[sllowe]

Nice job, Lu.

I'll add onto the evidence that there ARE good neuro's out there.

The one who spoke last week said that MS is always active, though MRIs may not show increasing lesions.

Rena - In-active, phoowee on them!!!

[cuttersmom]

I have to say that I went to Mayo AZ in Feb. and had a wonderful experience.  Now granted, I was diagnosed by a neuro here in Nevada with RRMS, but since I'm not to keen on most MD's here, went to Mayo for a second opinion before starting on DMD.

I thought Dr. Carter was great.  His neurological exam of me surpassed x3 what my neuro here did.  He was patient to explain things and answer any questions that we had.  The urologist was also pretty good and very thorough, although he didn't give me the course of treatment that I wanted.

I know I didn't go in there with numerous question marks around me, as Chrisy and Cynde did, and I guess that's where the problem lies.  I just thought a good experience at Mayo needed to be defended.

Kristen

[Weakandfalling]

NancyT,

Sinko de Mayo?  I cracked up!!  Brilliant!!  I'll never forget that one - it's so appropriate!!

Chrisy,
I share your experience and concerns!!

WAF

[Nancy T]

There has been a joke going around for some time (masquerading as a true story, but it certainly isn't, as the Snopes site confirms) involving the Titanic and a load of mayonnaise bound for Mexico that the ship was supposedly carrying... that's where "Sinko de Mayo" comes from. But we found a new use for it, eh? :)

Well, tonight my "BENIGN paresthesias" are acting up again, if that's what you call Lhermitte's. But I'm not to worry about it, no; what's a little bit of ongoing CNS damage? No biggie.

Nancy T. (undiagnosed)

[Weakandfalling]

Never heard of that one - that would be some load of mayonnaise!!  But I like your use of the phrase better!

Then there's the current brouhaha on this website about the "stinko de Mayo".

WAF