A question for Quix & the experts here

[goofysmom1]

Hi everyone,
I have been reading, but not posting much lately.  Have been preparing for my trip to the Mayo Clinic in Arizona, as well as dealing with the holidays and 2 1/2 feet of snow, wind, rain & flooding ( I live near Seattle)....

Anyway - I am in Arizona at the Mayo clinic.  We arrived on Wednesday & I met my Neuro yesterday.  A very nice man and very focused.  I know that some members here have had not so good experiences here, but so far every person that I have come into contact with has been extremely nice, empathetic and kind. My Neuro asked me questions that I had never been asked before, certainly not by my previous Neurologist.  Anyway, so far I feel really good about things here.  (Of course if I don't leave here with some answers, I may change my tune....)

My Neuro suggested a number of tests, most of which I have never had done.  (my evil neuro in seattle did an MRI of the brain & when that looked "normal", he clearly didn't know what else to do)

The tests on the schedule so far (and this can change):  MRI of C-spine & T-spine, Opthomology, VER, EMG, and blood work galore.  He was satisfied with the brain MRI (that evil neuro ordered) and said that at this time, he saw no reason to repeat it.

Here is my question:  Other than a lumbar puncture, are there any other tests that I should be asking for?

The Neuro said that some of the blood tests were for specific disorders/difficiencies (not B12 etc) that can cause neurological symptoms, but he also said that he wants to test for MS (thus the tests scheduled so far).  Would it make sense that they would do all of these tests first, to see if MS in the picture before deciding if the lumbar puncture is necessary?


Thank you for your help!
Chrisy

[JonM]

Without a positive MRI, I doubt you will ever get a DX for MS.  All these other tests can indicate consistency with MS but not DX it.  They are also used to rule out all the MS mimics.

Getting DXd still requires presenting with multiple symptoms typical of MS separated by time and space and a positive MRI.

Jon

[flowerfloosey]

Thanks for your quick reply. My friend just came from there and had an awsome experience there. I have multiple health issues that haven't been solved other than a positive LP for ms with no leisons. Are they doing other work ups related to other issues or just the neuro stuff. Also do they work on weekends? Thanks for writing about your experience. I will be waiting with you to see how it goes for you. I am praying that you get answers, Take Care,
Cynde

[goofysmom1]

Hi! Thank you for your kind thoughts.  I don't know that you can request a specific doctor - I didn't know who I was seeing until 1 week before I came to the clinic.  Based on your symptoms when you make the appointment, they automatically schedule certain  tests - then cancel them once you are here if they are not needed.  So far I have been impressed with everything.  It is a very well run facility.

If you get the appointment (be prepared to wait, I had to wait 3 months), and come prepared.  Bring your list of symptoms, a daily diary of symptoms and results of any tests that you have already had.  

I will post my complete adventure at the Mayo Clinic when I am done here - so that there is a better understanding of how things work at the Mayo Clinic.

Stay well!

Chrisy

[flowerfloosey]

What is the name of your neuro there. Wish I knew who to ask for and who to avoid when making my appt??

[flowerfloosey]

I am praying for you that you can get some answers. I am waiting to get a call from Mayo that I have been accepted as a patient. I have a positive LP with no leisons and many ms symptoms. Another kind of puzzle.
I will be interested in hearing all about your trip and experience there.
Hugs and Good Luck!
Cynde aka flowerfloosey

[doni54]

Hi Chrisy,

Sounds like you are having a good experience with Mayo.  That's good news.  I agree with Lulu about the tests and hope they all go well.

Keep us informed on what's going on with you.  

Take care,
doni

[Lulu54]

Chrisy,
The blood work up is an absolute necessity to rule out all the mimics, or at least to shorten the list.  The other tests are also good to have done.  Be sure you bring home test resultswith you to save effort later on in gathering them for future use.

I understand a number of neuros no longer see the LP as a necessary test. It doesn't confirm a dx of MS but adds more pieces to the puzzle.  

I dropped you a note about Mayo AZ - I hope you will share your experiences with us here.

good luck, Lu