Cleveland Clinic Weston Florida

[floridamom2]

Has anyone here been there?  I have been referred to see another team of neurologists at the Cleveland clinic in Weston since my doctor thinks the Mayo clinic did not do the proper workup that the $15K should have paid for!

I would appreciate anyone's take on this clinic - am nervous about starting another series of tests that may bring me to "post viral syndrome dx" again with more time and money down the drain.

Hugs to all!
Kristin

[floridamom2]

Hi all and thanks so much for your support and help!!

Jo & Tammy:  I decided to sleep on it and woke the next morning deciding to do a bit more research on the MS specialist in Tampa that Siddy sees.  He had rave reviews on a few of the "rate your doctor" web sites and then I found out he was from New Jersey.  I am from NJ and so is my husband and all of our families.  I felt like this along with everything else was someone telling me to give this guy a shot at it.

I have an appt. to see him on the 24th but had also made an appt. for the Weston CC for August 11th and figure that if I see Dr. Cascione in Tampa first and agree that he is the one I will cancel the othert appt.  He is not a provider of my ins. so I will have to pay more but I feel that he sounds very worth it.     Thanks to you both for all your love and support!!

Stargazer:  I can relate, I have been told by 4 neuros and a2 other doctors now that I am a complicated case but they seem to stop there.  No one wants to put the time and energy into figuring it all out.  Your case sounds so much more compelling than mine and I wish you had found someone to give you the time you need and deserve.  Can you go back to the WV MS specialist to get the Copaxone or is she now thinking that CC is leaning towards something else and therefore won't treat you?  Your story makes me so aggravated and I wish I could do something!!    Have you talked to people here for advice?  We have alot of great people with great thoughts on how to handle thses situations.  I will be praying for you to get some answers and treatment soon!!

Hugs!
Kristin

[stargazerv_2000]

The only thing the CC will bust will be your bank account unless you have very good insurance.  I saw a doctor here in WV and a specialist who practically told me I had MS and said she would treat with Copaxone but she wanted me to have a second opinion at the CC.  They told me in a 400.00 consultation they saw a brain disease but they needed to do their own testing.  I can not even tell you what the films show but they like twice saying they would send me a CD.  They said they would get it right out, twice.  Never got it.  They ordered a whole day of 3 different tests.  abnormal VEP, Abnormal Tourtellotte Spinal (for MS) and still they said they could not rule it in or out.  Total costs of bills were in the thousands.  They said I had a gait abnormality, a serious disease and needed follow up but I could not afford them so I had to go somewhere else.  Later I got the report from WV that said I had tiny Dawson's Fingers and demyelination. My Nerve Conduction Study proved I had a disease damaging my nerves.  I have been seeing doctors for 20 years.   NEITHER one or any of all the other Neurologists would diagnose me even after seeing the lesions and damage and said I had a serious condition of high proteins in spinal fluid so I keep having to have more tests.  Everyone has to make their own choices.  I was told my case was difficult but I cannot read out of my left eye from Optic Neuritis and it cannot be corrected.  If you have flashes of light   I think it is more of a hassle for anyone to prove it to the insurance co.  In other words like so many others, I am on my own.  If I can find a doc to prescribe LDN, I am going with that.  

[wingnut19]

How are things going today, my friend?  I hope you're doing well and are at peace with any decisions you've made!

:)

HUGS!!

Tammy

[cjacks]

Kristen

Absolutely. If this place takes your insurance , and is relatively close , why not go for it .

Someone just posted on an other thread( I forget who), Go in with no expectations , Look  at it as nothing more than a day or two out of your life , a minor inconvenience. That way you won't get too disappointed if it turns out a bust. And if it does , move on..

I wish you the very best.  Please let us know what you decide.  :)

Sending Hugs and prayers

Jo

[floridamom2]

Thank you all soooooo much for your opinions, thoughts, experiences and prayers!!  
Yes, I have to sit down and figure this out.  CC is closer (1 1/2 hours) and my insurance plan is taken.  I have researched the doctor I am scheduled to see and he has 43 years experience but is new to CC.  

Siddy & Jo:  I did cancel my appt. w/ Dr. Cascione and never rescheduled.  I found out he is not on my insurance plan and being 3 hours away I was scared.  I keep trying to do the easiest most cost effective thing but end up just wasting time and money.  
Siddy - Did you get a dx with a negative MRI??  If I remember your story correctly yor original sx were weakness, right?

Elaine, Cyndi, Wanna, Moki, Tammy:  Thank you all so much, you have no idea how much your honesty, openness, and friendship mean to me and help me!!  

I love you all!!!
Kristin





  

[mokibear]

I agree with the fact that you need to follow your heart. What doesn't work for one may work for another. Really sit down and think it over and see how it feels for you. If it feels right, than I would say go for it. You need answers. Could this be a bust, maybe but you have to keep fighting the fight.

My thoughts are with you in this decision. Trust your instincts my friend.

Hugs
Moki

[Siddy1]

I wondered also, Kristin, what happened to your June appt. with Dr. Cascione - the MS specialist?  I know you cancelled an earlier one with him because of your busy schedule but I thought you had rescheduled when your children were out of school or did you decide not to see him?  
Marcie

[wingnut19]

I totally, 100% , wholeheartedly, without a doubt-- agree with Wanna......


Kristen, like Jo says, listen to your heart, it will help YOU for what YOU need, my friend!

I have heard nightmare and horror stories of the MS Clinic that I went to in May, and I couldn't have had a better experience....So, like Wanna says, every-one's experiences are different....

I wish I could guarantee that you're experience will find you the answers you've been searching for, but unfortunately there are no such guarantees in life....You can only keep on pushing ahead and fighting for what you believe in....

Like I said, earlier, I will be here for you no matter what you decide....It's obvious that you're ready to push forward, and I believe you should.....

{{{{{HUGS}}}}}

Tammy :)

[Want to feel well!!!]

Well, this will be unpopular but I must speak up.  I have been seeing an immunologist/rhuematologist at the Cleveland Clinic (in Cleveland) since April, and my experience there has been superior.  All of my testing and appointments are coordinated for me, my doctor is DA BOMB, and everyone I have encountered there has been great.  Aside from one scheduling glitch, which they took care of for me, I have had no problems with my level of care.  The doctor I am seeing is very thorough, and I feel like I am finally in the hands of a caring and helpful physician.

If the Florida CC handles patients with the same type of care as they do in Cleveland I would go there in a heartbeat.

Everyone's experiences are different, and everyone will have a different story, but I just wanted you to know that someone here praises the CC.

Wanna :o)  

[cjacks]

Kristen

Sorry the picture  Elaine painted of CC was not what you probably wanted to hear.  I have a very good friend who almost died from mediocre medical care . She was so sick that her cousin  stepped in and found her a great doc.  He was trained and worked at Mayo ( not neurology )  ,  he truly saved her life.  Could be he was the only good one they had ??  

Everyone one has such horrible stories. Would the CC be out of pocket again?  What happened to the dr. in Tampa ( I'm a little behind ) Siddy's guy , the hunk ??

You should do what your heart tells you.  Your inner being is very wise . What ever it is that you do we will always be here for you.

So , there are a few of us in Florida.  Stay cool ! !        

HUGS     Jo

[monotreme]

Hi Kristin,
    I think Mayo and Cleveland Clinics are both out of the same mold and will again waste your time and money.  Craig went to Mayo in Minnesota and Cleveland Clinic Mellon Center for MS.

   Mayo told him he is developing a neurological disease and come back when it is worse.  CC let him fall on the floor in the hallway as they did the Romberg test while the neuro was 10 to 15 feet away from him.  

  CC said there was not enough long lesions to dx MS and go to the neuromuscular center.  I said to go pound sand and that is a waste of time with four normal EMG results.  Then the neuro admitted there was nothing they could do for Craig with no MS diagnosis.  She admitted there was not really an obvious disease left to diagnose.  This was all put in writing...she did not admit it verbally to Craig at the appt...we got the records.

   There is another forum member who was not helped at all by CC.   When we were in Mayo in Minnesota, there were patients there who had been to the Florida and Arizona Mayo clinics.   Their comments were that all Mayo clinics run the same...like assembly lines and don't truly help anyone.  

  So I would take a guess that it would be the same story with CC.  All locations basically have the same attitude.   Take your money...it;s a business.

  Sorry to sound pessimistic, but as a nurse, I was really turned off by Mayo and CC.

   Elaine

[syndismilez]

Hi fellow Floridian!!!!
I have not been to the Cleveland Clinic. I wish you the best!  
I will be going to either Shands or Mayo as soon as I start up my
Quest again.
Don't ya just love these showers!  They really cool us off down here!
Take care!!!
Cyndi

[floridamom2]

Thank you Maggie for your support!!  You are so sweet!

Hugs and prayers back at ya!
Kristin

[LLWB]

Being from Oregon, I've not been there either, LOL. But if you are still doubting your diagnosis, I say "Go for it"!! At least you would know you did the right thing by seeking a second opinion.

Hugs and prayers, Maggie

[floridamom2]

Thanks dear friend!!  I appreciate the support and I know you are right where I am once again!
Love ya Grandma!!!
Hugs!
Kristin

[wingnut19]

Hi Kristen!! :)

Obviously you know I've never been there, but I just wanted to say hello and HUGS!!

It looks like you're ready to take another shot at figuring this out, so I say go for it!  I mean, we all need answers and if you want them--go get them, girlfriend!!  I'm right there beside you supporting you every step of the way!!

Love and HUGS!
Tammy