Mayo Clinic - Jacksonville

i have been to the mayo in phoenix. --literally just this past month... i have done a great deal of foot-work on my own.. and they basically simply confirmed my condition.. :-/ MS it is. and leading a healthy lifestyle-- and staying on avonex-- was their prescription.

I'm concerned that you're going from doctor to doctor, having the same tests repeated, and doing that in such a short period of time...

that unless you have significantly worsening of symptoms in between these visits, it may well be that all the tests will continue to come back "negative", or inconclusive, and you'll have spent a considerable amount of time and money to not get any answers.

Did your neuro dismiss you? That is, is he willing to continue to try to pay attention to any new symptoms that come along, or increasing intensity of current symptoms, or has he said something like, "I can't help you, go find help somewhere else" without giving any further direction (other than going to the Mayo clinic).

Did you say to him, "...well, then, if all the tests have come back negative, and I'm still experiencing these symptoms, what else might it be? Perhaps it is not neurological in nature; should I be seeing some other sort of specialist?"

There are so many different diseases that "look like" MS from the outside, doctors are indeed reluctant to diagnose unless they get some confirmation of symptoms through the tests, and apparently all your tests are coming back negative, right now....

I think if I were in your situation I'd go to one (or both) of the visits you already have scheduled, and then if there are STILL no answers, then pursue the Mayo clinic.

Thank you for responding Uppitycats -

I have not been dx'd. One year ago I was dx'd with Bi-Lateral Trigeminal Neuralgia and after a few months, I began with MS type symptoms. These symptoms have progressed steadily over the past 7 - 8 months.

My previous neurologist said that he cannot help me and suggested that I see a neurologist at the Mayo Clinic. I do have appts. scheduled at the University Of Miami the end of July and Shands/Jacksonville the middle of August. I am not expecting to go to all of these specialists, but I wanted to schedule them, in case I am still looking for answers at that point.

My appt. with the Mayo Clinic 6/26 - hopefuly - will be the only place I'll need to go. My last brain MRI was in February. I don't know if they will order another or not. My LP was just a month ago, so I will be bringing the written report from that with me, along with the written report for my EMG/Nerve Conduction Test. (and countless blood tests results) They have ruled out Lupus, Lymes, B-12, brain tumor)

Whatever it is I am dealing with, has been debilitating.

Back in January ,I saw doctors at the Facial Pain Center at the University of Florida, regarding my Trigeminal Neuralgia. They are the ones that suggested I follow up with a neurologist regarding MS. When I asked why they would suspect MS, they said that my TN presents itself in an unusual way, consistant with MS.

After that appt., I saw a neuro back here from the Cleveland Clinic/Weston. Again, he brought up MS before I even thought to. AFter a neurological exam, he said that he had concerns about MS. The MRI came back clear and he told me to come back to follow up in three months. He did tell me that it can still show up in future MRI's.
In that time, everyone and their brother were referring me here and there. I did try another neuro, he sent me to the rheum. - sent me then to another neuro, who is the one suggesting the Mayo Clinic.

Obviously, I am desperate for answers. Hopefully, I will come home with answers and some kind of treatment.

Anyway, that's my story - I am counting the minutes until the Mayo appt.

Uppitycats -

Thank you for your point of view - I can see what you are saying. Now you have me wondering if I jumped the gun going up to the Mayo Clinic.

Thank you

Cathy

Hi Sanddune. I go to Shands in JAX. They are perfectly wonderful! Request Dr. Kantor if you can. You will not be sorry!