Considering going to Mayo

[amyecpa]

Hi Everyone,
I am considering going to the Mayo Clinic in Jacksonville, FL. They have a department there that is called consultative/diagnostic something-another (can't think, not feeling well). I've heard from one guy whose gone there with good results. Have you guys had any experience with them? a particular dr? I hope things are good with everyone today.
Peace to you all,
Amye

 

[lydia]

My father in law has been going there for about 6 weeks now for a series of tests as they try to figure out what ails him. So far, he feels as if they are very attentive and know what they are doing. Their campus is beautiful as I had a chance to drive him to a recent appointment while visiting them.

 

[[email protected]]

hi everyone,
i am considering going to the mayo clinic in jacksonville, fl. They have a department there that is called consultative/diagnostic something-another (can't think, not feeling well). I've heard from one guy whose gone there with good results. Have you guys had any experience with them? A particular dr? I hope things are good with everyone today.
Peace to you all,
amye

my husband goes to mayo in jax. And loves everyone there. He sees dr. Boylan and dr kennelley. The staff in the neurology dept is wonderful. He has been going there for the 2 years that he has had the disease. He was actually diagnosed by them. They have a great staff and we couldn't be happier with everyone. Good luck and god bless. Pam

 

[lydia]

You might want to change your user name foster!

 

[jspec]

Amye,

I also say Dr. Boylan. You can just tell he knows his stuff. His bio is below.
The Consultative and Diagnostic Medicine doc I saw, Dr. Glicksteen, isn't listed on the website. Too bad if he left as he was good too.

Kevin B. Boylan - Mayo Clinic

 

[djgators1]

Dr. Boylan is my husband's neurologist and he has been wonderful. Very professional, helpful, patient, kind and thorough. His staff has gone out of their way to return phone calls and answer questions, etc. They have made our journey a little brighter! As a caregiver I am thankful for such a fine clinic for my husband.

 

[amyecpa]

Thanks everyone for the very helpful input. I feel confident in the abilities of Mayo, but I have yet to make an appointment. My insurance will pay and I have transportation there. The problem is.... I've been seeing doctor after doctor for the last 12 months and have gotten that "it's all in your head" look more times than I care to think about. I'm just terrified of going (putting my office in a bind and costing my family money) just to get that same look and no answers. I'm just confused and scared.
Amye

 

[rose]

amyecpa,

If Mayo accepts you to be seen, there will not be any "looks".

The best doctors enjoy a challenge. The more interesting the case, the more interest it will generate.

good luck to you.

 

[jspec]

First, the numbness/tingling/pain is not in your head. Shame on doctors for making us feel that way if they are unable to figure a diagnosis. I think it is a coping mechanism for them to deal with the frustration.

Second, the workup at a reputable place like Mayo will, at the very least, confirm or exclude stuff like ALS. An exclusion from the experts ought to go a long way for your worries. Keep us posted and good luck.

 

[charlottecorday]

Hi Amy,

I called the Mayo in Rochester this am to set up an appointment. They first sent me to orthopedics, then was forwarded to neuro.There is a three month wait. I said sign me up, they qualified me as a selfpay patient.They asked a lot of questions, and I guess present your individual case to the docs,and they make the final decision then(to see or not to see).I am just afraid,since docs are bring fined for treating the ininsured(even if you can't get it because of preexisting conditions) I was denied by Aetna this am. It's going to be interesting if they see me at the Mayf course, I have to put money up front, but if they can fix me, it will all be worth it. Good luck to you.

Is the Florida Mayo better for neuro?

 

[amyecpa]

Charlotte,
I too called Mayo today and I have an appt with an internist on Nov. 9th. My insurance will cover 85% (praise God). I gave all my info to the internist scheduling person and then she gave me my appt. After we had all that set, she wanted a list of my symptoms. She said that she would talk to the nurse tomorrow and see if going thru neuro would be a better option. She said in that case I may can come in earlier. I have mixed feelings about that.... on the one hand, I've heard that the interenist in the Consultative/Diagnostic Dept really spend time with you, get to know your case and then schedule all your appts. I'm not sure I'll get the same treatment starting in the neurology dept.

I really hope they accept you and I hope it's not too expensive. What is your pre-existing condition, if you don't mind me asking? Have you gotten a diagnosed before? And to answer your question, no Florida is not better for neuro (that I know of). It's just closest to me and they list a Diagnostic Dept on their website. I will be able to drive there (13 hrs). And I totally agree with you, it's worth whatever cost to get answers and treatment.

I'll keep you in my thoughts and prayers,
Amye

P.S. Josh, if you're reading this... what do u think about going thru neuro instead of the internist?

 

[Ladyinn]

I went to Mayo in Rochester in Sept '09 after spending more than two years seeing specialists locally who couldn't give me a positive diagnosis. The neuro department at Mayo was thorough. I saw 8 different doctors over a course of 7 work-days and underwent as many special tests and x-rays and blood work. I returned for another three days of tests in November and saw the ALS specialist who gave me a firm diagnosis of ALS MND. I would have no reservations of skiopping the diagnostic clinic and going directly to neuro if you can get in. I was lucky and could get an appointment in two weeks thanks to a neuro guy I saw locally who made the referral for me.

Good luck, Hugs and blessings, Diane in SD.

 

[Robert Redmond]

I posted this in another thread but since you asked about the Mayo in Jax I'm going to repost here.

My brother saw a neurologist for a year who couldn't figure out what was wrong with him. The Dr's best guess was MG. Finally, 3 months before my brother died they transferred him to the Mayo Clinic in Jax, FL who told him in 2 days he had ALS.
I've never quite understood how I see some people diagnosed with it before they lose the use of anything and why my brother was 90% paralyzed and needing breathing machines to stay alive before they could diagnose him.
The late diagnosis likely robbed of him much needed help that could have made his last year and a half a lot better than it was.

Just throwing that in mainly because of the Mayo comment. I've heard lots of good things about them diagnosing ALS quickly for people and they were able to do in 2 days what my brother's neuro couldn't do in a year.

 

[amyecpa]

@Robert - I am so sorry for your loss. I will look back at your other threads, but I don't see how EMG's and symtoms wouldn't have led them in the ALS direction. Everyone says it gets easier with time and there is some truth in that, but I definitely understand loss and sometimes it hurts just as if it were yesterday. Much love to you.

@Diane - Thanks for the great input. Did they send you to other non-neurological specialists to rule out other things. My docs are thinking my symptoms/history may point to a systemic disease possibly autoimmune in nature. Lupus has been considered (it is pretty hard to diagnose) or a possilbe paraneoplastic syndrome caused by cancer somewhere in my body. Because of my age (34) endocrine disorders haven't been completely ruled out either. I just want to make sure that I'm not pigeon-holed and other things are considered. Brief description if you haven't read: numbness/tingling down entire right side (face to feet) that has lasted over a year, a head tremor, occasion head jerks and fasciculations that just started about a month ago. My neuro here has done a pretty thorough work-up, but I know he doesn't come close to comparing to the docs at Mayo. I just want to keep an open-mind and realize that something non-neurological could be causing all these neurological probs.
Amye

 

[ktmj]

Amye, you here different reports from different people - a few negative - but I can tell you my experience was 100% positive at Mayo Jax.

I went to Mayo in Jax and just entered thru the general practitioner route. From there the GP will guide and set up appointments throughout the clinic to fully investigate your issues. They will even get inside your head (don't be offended if they set you up with psychiatry too). My experience for that particular appointment was very good, even though I was highly skeptical about it when it was set up.

They will test test test, and it will not be cheap, but if there is something to find "right now" odds are they will.

The reason I say "right now" is that sometimes things just don't fit diagnostic criteria - not just with neuro issues but all medicine. Don't let my terminology scare you because a lot of us have mystified docs for quite some time.

Everyone was very professional and all appointments were timely, and at the end I had no problem getting the full transcribed notes of every doc I saw. Best wishes.