Abnormal MRI, two o-bands and not happy with Mayo neuro

[missmollymeyer]

I am so glad to have found this board....I am 45 years old and for the past four years have had random intermittent pain in my extremeties that comes and goes every few weeks or sometimes months.  When it happens, it is painful beyond belief.  Doc told me if it persisted we would do an MRI to see if I had nerve ending damage. My parents died, I got divorced, moved to a different part of the state, and my new doc gave me a muscle relaxer, which does not even put a dent in the pain.  Late Sept. I was in a car accident which resulted in me having a brain MRI which showed multiple lesions.  Was referred to Mayo in Rochester and was so happy to think that maybe I would finally get some answers that would tie seemingly unrelated symptoms all together.  Well, after my initial visit with the neurologist I went into the bathroom and bawled.  He was curt and dismissive and said "I'm not really sure why you're here.  As far as the pain, it does not sound neurological and I would advise you to take pain meds and try to get through it."  (this was right after I told him I do not want to be given meds and sent home...I want to know WHY my body is doing this!)  He did order a LP, which showed 2 bands.  I have an appointment Thursday to go over the results with the neuro, but after reading posts on these boards I have a sinking feeling about how that consultation will go.  I cannot tell you how relieved I am to have found these boards and see that so many others have gone through the same type of ordeal.  My question is, when I meet with him next week, do I push for answers and/or more tests?  Or just resign to the fact that this is how Mayo is and go elsewhere?  Your opinions would be greatly appreciated!

[disillusioned2014]

I have dealt with Mayo my whole life.."It's all in your head" "Psychosomatic" Beside manners out those large windows your tax paying dollars have paid for. If you are still looking for the MRI impression/report online portal look under: MedicalRecord and Results and go down to Radiology reports. More to come from me..I have lots to say. I am so glad I found this site!

[Joyfuldanser]

Thankya for the advice...will learn how to use this forum yet!  Yes UNMC is the med center in Omaha.  Every neuro (3 of them) pushed psych as the cause of the sudden onslaught of symptoms, including UNMC, until they conceded to the spinal tap, and their psyciatrist reported that I am sane.  Ha.  

Again, thanks.

Becca

[kwarendorf]

Hi Becca- Welcome to the forum. This is a pretty old thread (last update over a year ago) You may get better response if you Post A Question) using the link at the top of the page.

As to your question, is UNMC = University of Nebraska Medical Center in Omaha?

Kyle

[Joyfuldanser]

I am 42, and have been on a medical roller-coaster for 1.5 years.  It began with pain all over, and continues with this:  joint/inner ear pain, muscle spasms and eyesight degeneration, speech difficulties, balance issues including falling, urinary incontinence, abnormal mri and 2 obands.  Dropped out of grad school due to cognitive and memory issues.  Lost my job.

Have been to Mayo....diagnosed Fibromyalgia, said "deal with it and see psychiatry."  Saw psych....they discharged me after 2 visits.  

Seeing UNMC neuro/rheum specialists who are great...however require 3 obands to diagnose.  Again, told to deal with it, although they did refer me to phys. Therapy for the left side (my left hand doesn't grip anymore)

With obvious symptoms, 2 obands and an abnormal mri still no ms diagnosis.

Question:  can anyone recommend an intelligent neuro who isn't afraid to help a patient with "only" 2 obands?  My life is falling apart.

Becca

[LilMinnie]

I just wanted to say hi and that I know how you feel. My first neurologist was very dismissive. I was there for about ten minutes, no neuro exam, and told me my issues were due to a lack of sleep, and I don't have MS (I was referred and just looking for answers) and needed to take a muscle relaxer at bedtime.
I self-referred to my second and current neurologist, who is great. We don't know for certain what I have, but he is taking the time to listen and evaluate me and explain things.

Best of luck,

Hugs, Minnie :)

[essdipity]

Those of us who have been on the forum for several years or more have heard many negatives about neurology at Mayo, and even have a saying, "Hold the Mayo."

Why their criteria for diagnosis of MS differ from those of all other reputable centers (at least in the US) is a puzzling question, about which there has been quite a bit of speculation. But in any case, many of us here would hestitate to recommend Mayo to newcomers.

Neurologists in general are not known for their interpersonal skills, to put it mildly, and when MS enters the mix, with its difficulty in diagnosis, many patients are put off, hurt or angry by apparent brush-offs and even rudeness on the part of a good many medical practitioners. There are loads of threads here that talk about this.

Nevertheless, there are kind and compassionate MS specialists out there. If you need help finding one, members here can help with suggestions on what to look for.

I really have no idea whether or not you have MS, but I do know you need a thorough assessment, which it appears you have not yet gotten.

Good luck in getting to the bottom of things, and please keep us updated.

ess

[missmollymeyer]

Thanks supermum.  They did use contrast for the MRI.

About a week after the car accident, I started having vision problems, and then had one of the worst episodes of pain I've ever had, this time on the top of my hand, though usually it is my arms.

I think perhaps once I told the ER doc about these recurring episodes of pain, she was on the ball enough to think something neurological might be going on.

In my opinion, the car accident was a blessing in disguise...it got me to the ER, got the MRI, and got the ball rolling sooner than I would have on my own.

You are right about looking elsewhere, and I guess that's why I was so upset.  Everyone kept saying "oh, they will take care of you at Mayo!" But when I got there it was like a slap in the face talking with that neurologist. He made me feel there is nothing wrong with me when I know there is.

I will say, though, that everyone else I dealt with there was kind and professional.

[supermum_ms]

Hi and welcome to our little MS community,

Your test results (both MRI and LP) in my opinion, are indicating MS is a 'possibility' so i'd think further testing is warrented under the circumstance BUT if Mayo is the place to do that or not is up to you, i just dont have any experience with them (different country) to comment. Though i tend to think if anywhere has already made you cry, for their dismissive attitude towards you, then going somewhere else for answers, might be the better option for you anyway.

A couple of things to keep in mind, the MRI you had for your car accident would probably not of been done using MS protocol, which is basically thinner slices than they generally run. They also typically do the MRI with and without contrast when looking for MS, lesions that light up are demonstrating active demyelinating lesions and that is very useful in determining what could be causing the lesions.

MS is just one of the possibilities, there are other conditions that cause them too eg hypertension, diabetes etc. There are many MS mimics, so lesion location, size, lighting up and other diagnostic test results like the LP, are all important in the dx process. Though your clinical signs of neurological causation, your sx list and sx behavior are just as important when it comes to diagnosing MS.

For reasons we dont understand, Mayo seems to need 4 0bands 'unique' to the spinal fluid, were as world wide only requires 2+ 'unique' 0bands. A possitive LP is not actually recquired for a dx of MS, though we still here the LP was used to exclude MS. Its suppose to be used, to add weight towards, along with all the other evidence but if a person doesn't have a possitive LP, that doesn't mean they definitely dont have MS. Unfortunately there isn't any single test that can do that yet, maybe one day.

We typically recommend, if you deside on a second opinion, to make sure they are a neuro who specialises in MS.

Cheers.........JJ        

[missmollymeyer]

Thank you so much, Sarah!

[SarahL2491]

I found this quote by our beloved Quix who is a retired MD, who also has MS.
I clipped it from a long post she placed on our forum.

"
2 O-Bands are considered positive by the majority of the MS world.  The Mayo Clinic has started requiring 4 or more to call it positive for reasons I have never seen explained or justified.  Several members of our flrum have 8 or more here.  10 is lots. "

Maybe you just need an MS specialist and not a large Clinic like MC?
I personally went thru 4 neuro's before finding my perfect neuro (I like to think)

[SarahL2491]

that I can't help you with!  I have mine and cannot access it because I have apple.  I think it may take a special program?  I know some people have their neuro print out the pages showing flares on the MRI, not to confuse you.

I'm not sure on the "less than 4" and am sure others on here, if it were not the week-end, would jump in here.  There are some good health pages listed on the right hand side that cover MRI's and lesions, perhaps you might gain
enough information there.

I'll try and do some research for you on the O bands

[missmollymeyer]

Thanks for the reply. I have only read the LP results that were posted on my online patient info.
It said that the bands were not found in the serum and since there were less than 4, it was a negative result.
I have a copy of the report and the cd of the mri online, if I can just figure out how to access it lol.

[SarahL2491]

Were the o bands in the CSF fluid or the serum or both?  The Mayo is not the gold standard they used to be unfortunately, finances can ruin the best of clinics, it seems.

Yes, many of us, not to discourage you, have spent years going from neuro to neuro until we found one who either knew what he/she was talking about or was passionate about their chosen profession.  

Did you read just the radiologist report?  Do you (I hope) have copies or can get copies of both the MRI and the rad report AND the LP results?

Welcome to our little corner, please separate your typing with odd paragraphs here and there, many of us have cognitive difficulties and cannot absorb that much type all bunched together.

Hang in there, there has to be an answer somewhere.