Mayo Clinic - Jacksonville

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CathySt
Regular Member


Date Joined Apr 2006
Total Posts : 24
   Posted 6/10/2006 3:40 PM (GMT -7)   
Has anyone been to the Mayo Clinic in Jacksonville?  My Neuro. suggested that I go to the Mayo Clinic, since he cannot help me.  I have not been dx'd - all tests clear and everything  else ruled out. 
 
This is torture!  At this point, I have an appt. at the University of Miami in five weeks and Shands/Jacksonville MS Clinic in two months. 
 
If the Mayo/Jacksonville is a great place, I would tack that on. 
 
Also, I any of you have been there, could you recommend a doctor?
 
Thank you!!
 
 

aps
New Member


Date Joined Jun 2006
Total Posts : 4
   Posted 6/10/2006 4:50 PM (GMT -7)   
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.

RUtired2
New Member


Date Joined Jun 2006
Total Posts : 4
   Posted 6/16/2006 8:11 AM (GMT -7)   
If you have gone to the Mayo Clinic in Jacksonville, I would like to know what you thought about the doctor you saw? I live 2 hours from there and think I need to find another doctor who is more experienced with MS. I would appreciate any thoughts you have. Thanks

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/16/2006 9:27 AM (GMT -7)   

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.

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/16/2006 9:31 AM (GMT -7)   
RUtired2, what is it about your current doctor that you don't like, that makes you think you need to find a different neuro? I see you have been diagnosed fairly quickly with MS, once you got to this current doctor. Is he not providing you with what you need?

I'm curious why people seek out different doctors. I don't even see a neuro anymore, and am quite content with my family practioner....
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


CathySt
Regular Member


Date Joined Apr 2006
Total Posts : 24
   Posted 6/16/2006 10:27 AM (GMT -7)   
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
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/16/2006 1:59 PM (GMT -7)   

Yes, see, that neuro who told you to come back in three months: he's trying to develop a time line with you...what might change in three months; are things worsening/getting better; are there new symptoms, are there stronger and more definitive signs - -that sort of thing.  Sometimes the only thing a doctor can do is watch a patient over time, to see what develops.  When all the tests come back negative...sometimes it means that it's just too early for more definitive signs to show up on an MRI, and by watching for other clinical signs -- signs they can test for in their office, watching you walk, testing reflexes, strength, that sort of thing...

combined with increased symptoms, or new symptoms -- then they can sometimes diagnose without depending on an MRI. But if you go from doctor to doctor and each sees you as "new" - -all THEY can tell you is the same..."watch, wait, come back in 3 months or sooner if things worsen, and we'll see what develops..."

 

Anyway, good luck to you with your visits.  I hope that something comes of it all and you'll be satisfied.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


CathySt
Regular Member


Date Joined Apr 2006
Total Posts : 24
   Posted 6/16/2006 2:27 PM (GMT -7)   
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

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/12/2008 3:57 PM (GMT -7)   
hi cathy, i was reading you posts from a couple of years ago and I could tell by hospitals you mentioned you are near where i live in florida. I was wondering how you made out with the docs and was wondering if you can give me some info. Did you go to the hospitals in north florida? I was thinking of going to the docs in weston. Post to me or i will try to figure out how to list my email. how are you doing now 2 years later?

zimmer41
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/15/2008 9:18 AM (GMT -7)   
Hi Sanddune. I go to Shands in JAX. They are perfectly wonderful! Request Dr. Kantor if you can. You will not be sorry!
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