jacksonville Mayo Clinic

[Sunnytoday]

Anyone been there?
Just grabbing for straws, my family is looking for a new neuro, and they want to try here. I'd like to try Houston.
~Sunnytoday~

[gd1031960143369]

My mom was diagnosed with GD over 20 years ago; went to Johns Hopkins to have the eye surgery, which by the way, was very successful. She had the iodine procedure done at Mary Washington Hospital in Fredericksburg, VA, and that too, went okay.  Now, at 75 years old the only medicine she takes is synthroid.  Sorry about the spelling.  Overall
my mom is in great health, except for her memory.  She repeats herself constantly,and ask the same questions over and over.  She is still driving, paying her bills, goes to church every Sunday.

I don't know if the disease has anything to do with her lack of memory, but she is perfectly content with the way things are.  She says, as long as I can continue to drive, take care of my house, do things in the yard, she will not go to the doctor about her memory, or lack there of.  She lives alone and does not want anyone living with her.

I'm her  only daughter and worry all the time about her, because I can see that she gets a little worse every day.  Should I just let her live her life and be there when she needs me, or is there anything that can be done?

[julia111]

Hi!  I've been to Jacksonville, Mayo twice.  

Since I live in the Southeast I know a lot of people who have been there and had great success.  

My mother had carotid artery surgery a few years ago - very risky surgery - turned out great.  She is going back in Nov. to have the other done as it is more than 75% blocked.  She also had a hole in her retina or cornea, I can't remember which, repaired - and that went well too.

My luck at Mayo has been so/so.  

The first time was about 12 years ago.  I brought a diagnosis with me from Johns Hopkins, Baltimore that was: Chronic Fatigue Syndrome, Ebstein Barr Virus, Ranaud's and Possible Mixed Connective Tissue Disorder, ANA 1:640.

The Internal Medicine Dr. I saw during first visit at Mayo changed all that to fibromyalgia.  Rheumatologist said: Raynaud's; and Possible Mild Lupus.

About this time last year I started experiencing neurological symptoms.  Previoulsy, I had only had fatigue, pain "fibro fog."  New symptoms included speech, numbness in right side of face and toes on right foot, buzzing, weakness, involuntary movements, dropping things, cognitive difficulties . . .

After a MRI in my home town - of brain without contrast on .25 Tesla - was Normal, I ended up back at Mayo in early 2008.  

The rheumatologist was curt.  He took away the "raynaud's" dx. as my fingers didn't happen to be "white" at the time.  He did all the talking and really didn't care to hear what I had to say.  He said he could not deem my tests done at Johns Hopkins "reliable" when referring to the positive ANA 1 :640.   He mentioned in the report that "The patient seems to think she has a neurological illness" - uh, NO - he was the one that said some of my symptoms don't fit Fibromyalgia so he'd like me to see his "buddy" down the hall, the Neurologist.

The Neurologist seemed a lot nicer and listened to what I had to say. He did what I would call a "medium" sized exam (not very detailed, but didn't blow me off either).  He told me to be carefull picking up and carrying my daughter - which was a sign to me that he believed me and my long list of subjective complaints - and he approved my use of Provigil, Amytriptiline - and suggested Baclofen, Neurontin and one other I can't remember.

I left with a "re"diagnosis of Fibromyalgia and a pat on the back.  "Come back if you get worse!"  

I really feel like the Mayo Clinic is made up of lots of different specialists who "do their own thing."  My first visit, the Internal Medicine Dr. would not agree with the Reuhmatologist.  The visit earlier this year, the Rheumie started our meeting out by saying, "Once I've examined you, I am going to have my own opinion.  And that opinion might differ from everyone else's opinion.  And it's ok too, if you say, "Hey Doc, I really think your're wrong and I think this is what's wrong with me." ???  Well, it turns out when I tried that, he just held out his hand to stop me.  He loved the sound of his own voice.  

Ok, I better stop rambling!  But,real quick, one other story regarding Mayo Jacksonville - a friend's daughter had been ill for years - I think Mayo dx'd her with Graves Disease years ago.  She continued to worsen and it wasn't until she went blind in one eye that Mayo dx.d her with MS.

So, needless to say, you can see how I feel about Mayo, JAX.  Given the complexity of your situation, I would skip Mayo, JAX unless you get referred to a particular specialist who might be interested in your case.

Best wishes!  Julia

[Lulu54]

Sunnytoday,
the OSU MS cllinic is highly repeccted and that is where I travel to for my neuro.  You have to have a doctor referral but I'm sure you coulld get that.  Any of the five doctors would be good - I would schedule with the first one availble.

http:// medicalcenter.osu.edu  /patientcare/healthcare_services/multiple_sclerosis/

Good luck in figuring this out,
Lulu

[hbananas]

Have you been to www  msneuroratings  com  ??  You have to register to look at the posts, but it's easy.  I just looked to see if anyone had things to say about Jacksonville, FL.  There is one post there that mentions someone favorably.  There is also a glowing post about someone in Alabama.  Check all your surrounding states and see what you can find.

[essdipity]

Have no personal experience with the Mayo Clinic and MS, but I've heard lots of negative anecdotal stuff both here and elsewhere. I'm sure you have too.

So, my advice is -- do pardon the pun-- Hold the Mayo.

Feel well soonest,

ess

[Sunnytoday]

well, they said that I had patchy areas on my MRI's and my LP was abnormal but that i had "stumped them" and they were clueless... so, they said in all their thousands of patients, they never presented like me. So, no MS. But, no other dx. either.

I will look at those other center's, thank you. We will try to stay in the country, my insurance won't go out of it, I don't think.
~Sunnytoday~

[watson01]

Since your able to travel you mite consider University of Michigan MS Clinic, Rocky Mountain MS Center, or the Karolinska Institue if you want to go out of the country.  So did the doctor's in NY attribute all your neurological symptoms to MS or were they completely dumbfounded?

[Sunnytoday]

hmph, no.
Sunny AL coast, actually. We are looking for a large university or reserach hosp. to go to. The MS specialist basically did the hot potatoe thing on us at NYU after my last e-mail to him he has yet to respond, and the NYU neurologist that we would like to see doesn't take our insurance, so we are looking elsewhere at this point. But we know our little small town doc,'s are going to know enough so we are going to travel again.
Mom and I are researching anything right now, I've looked at so many dr,'s online- FL, AL, MS, TX, TN, NY, and anyplace anyone will suggest. All large places are far way, the closest is 5 or 6 driving hours and it's almost as good to just fly somewhere at that rate.
~Sunnytoday~

[watson01]

Wow, you've traveled all over to see some many doctor's trying to get a Dx.  Do you live in the Houston area?

[Sunnytoday]

Hi,
I did read the post on the Mayo Clinic, which is why I'n dragging my feet on going to Mayo something terrible, even if it is the clinic in Jackson FL.
I'm hoping we will go over to Houston, if possible.
~Sunnytoday~

[watson01]

Hi Sunny!  Checkout my post titled 'Mayo Clinic' you will see many peoples comments on their experiences of the Mayo Clinic I was considering driving up to MN if my neurologist couldn't find out what is causing my neurological symptoms.

[Deb61]

I've not been to the Jacksonville Mayo or the MS clinic in Houston, I'm sorry about that.  I have heard a lot of good things about the University of Texas Southwestern Medical Center at Dallas and Dr. Elliot Frohman who works there.  I'm sure if you google his name you can find out much more than I can tell you about, here.

Deb