The latest from the Neuro

[sunshine8]

I am relatively new to this forum and have posted my story a couple fo times in tbe last few weeks. In short I have numerous lesions discovered by accident on an MRI last September, Negative LP, Negative VEP, Bloodwork is negative for lyme  and other things. I don't have major symptoms, only a slight left hand tremor,some sporatic dizziness, and maybe some balance issues.  The Neuro sent me to an MS specialist who didnt think I had MS "because of a negative LP, and the fact that I don't really have symptoms", My Nuero sent me for a 2nd MRI at the 6 month mark on the same 1.5T machine and it showed new lesions. I met with him again this past Monday after Quix and others gave me some good questions to ask. Basically he is still very concerned that this is MS, but says that I don't officially meet the McDonald Criteria yet. He was talking something about how the two different MRI's show two distinct episodes over time, but because I have had a negative LP and VEP that there is nothing to corroborate it. He wantd to repeat the MRI in a month (Which will be my 3rd in 8 months) and if it shows new lesions send me to the Mayo Clinic for a consult.  His theory is that this is early onset. I have to keep a symptom journal and let him know of any major symptoms that I develop. He said that the location, size and shape of my lesions is a classical presentation of MS, but he is confused that with the amount of lesions that I have, that I don't have more symptoms. He also said that with all the tests they have run, that he has pretty much ruled out almost everything else that would cause my demylenization. I felt like he truly is staying on top of this and that he is concerned. It will be hard to wait another month thinking that there is something wrong with me, but I don't think I have very many options. He called my case atypical and I can see how it is challenging. I presented with an abnormal MRI, but not with any symptoms.

I have really appreciated this forum and plan to post more often now that I really think I am heading down an MS path. Thanks to everyone for taking the time to listen and help make me a more informed patient.

-Amy

[sunshine8]

Yep...I looked on that website. The trotter center in St. Louis is the Washington University MS Clinic. I am glad to know that they are on that list. Supposidly they also have a short waiting list, something like 2 weeks to a month. I think I'll steer my neurolgist there first before going all the way to the Mayo Clinic.

Been to KU med and neither myself nor my Neuro was impressed.

I am still working on the McDonald Criteria Post.......

[Quixotic1]

I have been recommending that people consider looking at an MS Clinic wihich is a member of the Consortium for MS Centers.  These are centers and specialists who have made a commitment to share all the research and to stay coordinated in provided the most up-to-date care and information possible in the field of MS.  

There is a center in St. Louis

The John L Trotter Multiple Sclerosis Center
660 South Euclid Avenue, St. Louis,
Missouri, 63110, United States

There are four in Kansas:  2 at VA centers, one at KU and one in Lenexa:

MidAmerica Neurosciences Center
8550 Marshall Drive Suite 100
Lenexa, Kansas, 66214,
United States  
Phone Number  913-894-1500  

Here is the main page of the Consortium.  My MS neuro is a member of the consortium and he is really on top of things:

http://www.mscare.org/cmsc/index.php

I hope this helps.

Quix

[sunshine8]

I am in Kansas, but grew up in St. Louis. Since my Neuro started mentioning referring me to the Mayo Clinic after he and I were not happy with KU Med, I have been looking into other centers in the Midwest. I have been trying to find any information on the Wash U Ms Clinic, since that would be a whole heck of a lot easier for me to go to, just a short drive across the state and my parents still live there. If anyone has any experiences with the Wash U Ms CLinic, I would love to hear them, I am curious to know how Mb2815's trip to Mayo goes. Good luck and keep me informed!  

Quix: I have some questions on the McDonald Criteria, but thought I would start a new thread, since I am sure there are others with questions too.

BTW: My only sysmptoms so far have been sporatic dizziness and a slight left hand tremor that comes and goes. Today, for the first time I felt an off-balance sensation for a few hours that was definitely weird. If I walked, I couldn't walk in a straigt line. Weird.


Thanks - Amy

[Quixotic1]

Hi, I may have overspoken about the "Mayo's philosophy."  They are not advocating a wait and see" attitude with everyone, but favor it with people who present with mild symptoms.  I don't know if that would be their attitude in someone who has mild symptoms, but a very impressive progression on MRI.  And I don't know that the whole organization has this view.

I quickly found this article, but it is old.  You can likely find newer ones.

My search terms were

  Mayo Clinic Multiple Sclerosis benign

http://www.mayoclinic.org/news2004-rst/2401.html

Hope this helps clarify.

Quix

[mb2815]

Hi Amy,

Welcome Missouri buddy.  I live in Springfield and am dealing with the same issues.  My neuro here does not want to tag me with the diagnosis and the consequences that come with that.  He is referring me to MS specialist and recommended Barnes/Wash U or the Mayo Clinic.  I chose the Mayo as I have had experiences with Barnes and the lack of staffing in recent past.  It was not a pleasant journey.

I am curious why Quix has this philosophy about the Mayo - is this due to recent dealings?  I have heard of several people going there and they have not taken the wait and see approach.  This is a little disheartening to hear.  It will be taking a ten hour drive and all the expenses that come with the anticipated 3 to 7 business day stay to their Rochester facility.  I go next week and was looking forward to a resolution so I can put this bag of dealing up and do what needs to be done.

One thing I want to caution you on is that if you are even considering the Mayo you should call right now and get an appointment.  Sometimes you get lucky and they have a cancellation and can get you in sooner, usually it is a few months wait.  I say make the appointment, you can always cancel it later.  I will post after my visit next week and let you know how things went.  I hope all the physicians dont have the same philosophy as Quix mentioned.  

I know it is very important to not let these things go - my dad did that and is now suffering for those consequences.  Loss of job and a significant decrease in his cognition.  He is now on disability and can not drive.  I wonder if it would have been treated at the beginning if this devastation could have been prevented?  Best of luck!

[6-paq]

You sound somewhat similar to my situation:  I have 3 brain lesions and all of my other testing has come back normal.  My Sx are minimal compared to many here, but I do have them.  My recent brain MRI is stable though, so I'm still sitting in limbo.  I'm atypical too.

I would think with your repeat brain MRI showing new lesions, like Quix said, that should get you a diagnosis!!  That shows a disemination in time!!  The LP and VEP are not needed for a Dx.

The number of lesions doesn't correlate with number of Sx.  It's about their location.

I think you're neuro is hesitating.  Maybe he just doesn't have the self-confidence to Dx you, but I would think that you have met the criteria.  I know the McDonald Criteria speaks about 9 lesions, blah, blah, blah, but you've met the dissemination in time.

Tons of ((HUGS)) for you and I hope you can get some resolution quickly!!
Take care, Pat :)

[Jazzyfizzle]

Hi Amy, I can't offer any advice on the MS issues, I have a 'mimic', but wanted to send you a message, and offer support and cyber-hugs. MS is a monster, but you can carry it, you are strong I can tell. :)  

Keep on Keepin on

Thoughts to you,

Jazzy

[sunshine8]

Thanks for you rresponse.  Looks like I need to read up ont he McDonald criteria. I'll do that and then I am sure I will have more questions to post.

As for the Mayo Clinic, I like in Kansas and when I asked why he would send me there he said that after sending me to the local university hospital's MS clinic, that is where he refers next.  I am grew up in St. Louis and know that Washington University School of Medicine has a good MS clinic. He said if I would rather be referred there, he can arrange that as well. Do you know about their philosophy?

Also, does anyone know of another Ms specilist in the KC area besides KU Med?

Here's hoping this MS stuf doesn't decide to attack one of those neurons that I need while I'm at work today.  :)

-Amy

[Quixotic1]

Oh my, if he is concerned about adhering to the McDonald criteria he would know that after documenting "2 distinct" episodes with lots of MRI evidence, NO FURTHER DOCUMENTATION OR SUPPORT IS NEEDED".  So his problem is lack of confidence, maybe. or maybe he is super conservative.

As for the shortage of symptoms; that means that the majority of your lesions fall into the "Unknown Zone" in your brain where we don't know it's purpose.  This is probably luck on your part and fortunate, because you haven't had to deal with many symptoms.  But, how can he ignore the two MRIs that show a lot of damage, brain atrophy, and increasing lesions in the last several months????!!!!!  Tempering this is the wait is only one month and your confidence in this doctor's investment in you.  That really is an important factor.

Holy cow, honey, you have lots of lesions and early brain atrophy!!!  Why would he play with disease that has already caused such changes in the brain?

I think this is overly cautious BECAUSE you have lots of brain destruction going on.  Yes, the symptoms are mild, but, if there is that much damage going on, what happens when the lesions finally spill over into the areas that will have lesions??  This will happen.

Now, about the referral to the Mayo Clinic.  This comes down to a philosophical debate within the NS community.  A small minority of neurologists, led by the Mayo Clinic, believe that the DMD's should be withheld in mild MS.  They cite economics, poor compliance, stigmatizing the patient, and no need for the drugs because the disease will "likely" stay mild.  If you go there for the next opinion it should be because you lean that way, too.  Or you should be prepared for them to recommend "waiting and watching."  

On the other hand, they may be as shocked as I am at your MRI's and be very aggressive.

The group that is in the greatest majority has good evidence to show that the disease remains active in all patients and does progressive damage.  They have shown that statistically the DMDs will slow down the progression of the disease and the accumulation of disability.  IT is also clear that the MS meds have their greatest effect earlier in the disease.  This means that 2 years at the beginning will have a great beneficial effect than two years of the same drug 4 years later.  Timing is important.

If you start the drugs you can always stop them.  If you wait, those years when they would have helped cannot be reclaimed.

Examining the reasoning of the Mayo Clinic, I find their arguments to be based on economics and "going with the odds" and not as if their own daughters were at risk.

I think you should be educated - all we'll help - on the pro's and con's of early treatment.  We have recently discussed this.  There are more arguments on by sides which we can talk about.  Here is the thread I discussed this in.  It's mid-way down the discussion.

http://www.medhelp.org/posts/show/504655

We can talk more about this in the morning.

Quix