heading to Cleveland Clinic...

[Thatgirl50]

At my most recent Neurology appointment I was told that he wants to send me to Cleveland Clinic (in Ohio). Has anyone had any experience there and please let me know what I can expect.

My neuro is sending me because he would rather they take a look at me before "labeling" me with MS. He said in his experience it has been rare that brain lesions arent present and would feel more comfortable sending me the Cleveland Clinic for a final Dx.

[twopack]

Good for you Girlie.  That's a quick get-in time too so you don't have to go through weeks of waiting.  Is your present neuro sending up a packet of stuff or do you need to gather your tests and symptom history yourself?  I'll be anxious to hear how it goes for you.

I apologize if I sounded negative before.  No doctor should be afraid of suggesting a second opinion or fielding a patients request to get one.  (That would be a whole nother type of doctor to stay away from. LOL)  I think the fact he considers the diagnosis of MS to be a "label" said a lot to me.  Sure, MS definitely can set up prejudice against us and limit some of life's choices.  I cringe to think that could start with the doc I'm relying on to find creative solutions and new treatment modalities.  I just prefer a doc who lays out what he's got, offers some choices, asks me for my input and then makes our joint decisions happen.

Maybe this was the perfect doc to see initially.  Could be he's your GPS brain "recalculating" and sending you off on a straight shot to the exact place you need to be.

Mary

[michelleric]

She is wonderful!

[Thatgirl50]

I just got word that my appt will be on 6/22/11 with Dr. Lail Stone at the Mellen Center, is this the doc that you see or are you familiar with her?

Thank you for your support, I will be sure to comment and let everyone know how it goes!

[Sumanadevii]

I dunno.  I sort of admire a doctor that has the "stuff" to allow a colleague to look over his shoulder.  After my experience, I sure went for another opinion after my dx.  Now had they disagreed, I am not sure what I would have done.  My present neuro made sense to me.  It seemed to go with the symptoms I was having....So I would probably have gone with her.

It's hard to decide just what to do but my personal opinion is a second or even third opinion can't hurt.  

Just my take.

[twopack]

Hi TG.  I'm probably one of the two unsatisfied customers Michelle mentioned but it was a long, long time ago.  Everyone was nice enough at CCF but the referral was months after my first symptoms appeared and they were all but gone by the time I was examined there.

I didn't really know I had reason to be upset until my MS diagnosis was confirmed in 2010 and I realized the Mellon doc had ignored or missed lesions on the 1990 MRI.  You can read about my experience on my profile page if you want (just click my username to go there).

The world of MS is entirely different now.  Knowledge and experience and treatment options have exploded.  I'm sure your experience will be closer to Michelle's.

The doc that doesn't want to "label" you and prefers to get back-up because he doesn't have what it takes to pronounce a diagnosis himself should receive your thanks along with a request for copies of all your records.  That's my opinion anyway.  If he doesn't have enough confidence to diagnosis, how can you have confidence in his treatment choices?

Good luck to you.
Mary

[michelleric]

Just realized I didn't answer your ? as to expectations at appt.  "usually" you see the PA or NP first.  I also saw only the doc the first visit. It varies who I see at times.  If I am having any trouble I always get an appt that day or the next.  I also feel like they take their time, and have NEVER felt rushed.


I have never had an appt there that lasted under an hour.  I would expect about 1 1/2 hour appt for your first visit.  My neurologist spent about 60 + minutes talking to me and examining me. before she talks about the MRI.  She doesn't seem to rely on the MRI to DX MS.  She takes her clinical symptom approach, as far as I can tell.\

I also didn't have a LP, as she said many times they are negative, even if the person has MS.  She didnt see a need for the LP to DX MS as well.

She seems to rely on the exam and history to make a DX.  She is a wonderful clinician, in my opinion.

I have come across many pts. who are seem at the Mellon Center.  I only have met 2 that didnt think they had good care.  Granted, there are TONS of pts there.

Ok, any more questions, feel free to ask away,
Michelle

[michelleric]

My doc is at the Mellon Center at the Cleveland Clinic. I am assuming that is where you are being referred to, since it is an MS center.  She is probably the best doc I have ever had, hands down. I have seem one other Neurologist there as well, and he was excellent also.

The Mellon Center has been a great place for me.  I feel that I receive excellent care. I I switched almost all my docs to the Cleveland Clinic, so all my records are in 1 place. Never have met a "bad" doc yet, and I assure you I have lots of docs, unfortunately  :(

Best of luck,
Michelle

[Lulu54]

CC has a good reputation here with most folks.  I'm glad your doctor is looking for reassurance about this dx.  You want to get it right from the beginning.

hugs, L