Need a good Neuro in OHIO

[michelleric]

HI, I was wondering if anyone has a name of a good neuro in the Cleveland OH area. I am looking to get a second opinion, and thought this would be a good place to ask. My current Neuro is @ the Cleveland Clinic in the MS center. I like her very much, but want another opinion.
Thanks! Michelle

[slightlybroken]

I went to CC once. I had them post some of my records (test results etc.) on "MyChart", which is connected to CC website. You have to make a request to be on "MyChart" which takes a week to get a temporary password from them, sent by mail. You could get some of your records this way.

After you log in for the first time (when you get your temporary password) you can change your password. My doctor didn't have anything posted at first so I had to call him and request that he put my records on "MyChart". Now I have access to all of the blood work and MRIs that they did at CC. I can just print them from my computer if I need to. As far as the office notes, I don't have them, but like Rendean said, the place that you go to next can get them for free or you can get a copy for yourself at a fee.

[rendean]

For what it's worth... when you request records to be sent to another facility most larger institutions contract out the work that involves the retrevial of the information and where it is going.Your doc may have no idea that the records were ever sent. some places flag the charts that have sent copies to other institutions, some do not. All you have to do is call CC's medical records dept, and ask how they handle medical records requests. You can have the records sent directly to you , at a cost which varies by state, or sent directly to the next MD for which most institutions do not charge as it is considered "continuity of care".

Good luck,
Rendean

[michelleric]

Thank you all for your advice on other docs and centers. It is good to hear the good, the bad and the ugly, as Lulu said. I am listening and will try to figure out what my next step will be.
Thanks to all of you...

[Lulu54]

Hi SB,
Its fine to talk about the good, the bad and the ugly.  I wrote a while back that at a luncheon there was a woman next to me who had nothing but bad to say about OSU while singing the praises of CC.  We hear the same about Mayo experiences - its either hot or cold and very little in between.

I was told pretty much the same thing by my PCP - the evidence has to be strong that you have MS before they agree to have you come in.  If I understand correctly, their main function is an MS research clinic - so they are obviously looking to find patients that can be incorporated into their work and area of expertise.  Yes, I had a couple enhancing lesions, black holes and other stuff I still don't completely understand.  It still wasn't a slam dunk, but pretty darn close.  

It sounds like PD's evidence was much less obvious, and he was still seen by the clinic, so go figure.

My main wish is that every one of these places and doctors would treat their patients with compassion and respect and give the evidence presented a thorough examination to find the causes of these ailments.  Too many of you are sick, definitely sick, but with no name attached to it or subsequent treatment.

Good luck with the search,
Lulu

[PastorDan]

I guess I'd say that my experience has been somewhere in between.  My prior MRI showed a few very small nonspecific hyperintensities, not necessarily indicative of MS, but no enhancement was noted.  Whatever else was in my records, they seemed to see enough in there to have me come in, and I spent three full hours there this Tuesday.  Nevertheless, the top doc (Chairman of the Dept. of Neurology) said I don't have MS, though I'm still unclear as to why he was so convinced.  They were supposed to have sent a referral to their general neurology section; that was Tuesday evening and I've heard nothing more on that end.

[slightlybroken]

This is my experience with Ohio State and just my experience. This was my evidence at the time...I had a neg LP, neg. SSEP, 4-5 lesions in the white matter of my brain, a possible lesions in my c-spine, all neg. blood panel for MS mimics)

I TRIED the MS clinic at Ohio State back in 2008. I was referred by my GP after my second neuro couldn't find answers and kept sending me to the open MRIs to have my pics done (0.7T). My GP believes I have MS in the early stages.

I was told by the reception lady at the clinic...that after they looked at my evidence (those lovely 0.7T strength pics, etc.) they were going to refer me to their neuro department because they really don't take cases unless it's pretty apparent that you do have MS. In other words, she said that you have to have proof that you have MS then they will take you.

I gave their neuro department a try in the hopes that I could at least get my foot in the door. Needless to say, that door was slammed on my foot. I was sent to a student neuro and they told me that my symptoms needed to occur in a particular order to be MS (which is wrong info from what I've heard) and since my blood work was normal, I was probably suffering from stress. Nothing life threatening, they said. 2-3 weeks later I was in the hospital with blood clots in my leg.

LuLu- I know you like these people..they are good when you have proof of what's going on with you. My mother's ex-boss who has MS goes to them. They are wonderful in treating MS...BUT you have to have proof or they won't even take you on. If I'm not mistaken, didn't you have enhancing lesions? So you went with proof to them and they took you. But you still had overwhelming proof that it was MS. I'm sorry..I don't want to over-step my bounds here but this is what I was told by them.

Michelle- I'm not meaning to detour you by any means. If you have proof (lesions in the right place, enhancement, etc..) go for it. I guess it all depends on what your current MS doctor is saying. But if your case isn't typical, I just wanted to save you the heartache that this place caused me.

I'm not even sure if I have MS but I know I wasn't suffering from stress and to wait 3 months for a appointment for the MS clinic and to be told you don't have enough proof, then to wait 2 months for a neuro department appointment, drive 2 1/2 hours to that appointment, and then to be told you have nothing but stress was like a slap in the face.


Like I said before, this was my experience, yours might be different. I'm sorry if I offended anyone...this is what I was told by Ohio State when I went there.

[PastorDan]

My 2¢ worth: Nowadays, any doctor's office ought to know the law well enough to not give you any hassle about getting copies of your records, or about sending them to another doc's office.  Not to say that they won't, but they shouldn't.  Also, if they're confident of their diagnosis, they should have no problem if you want to seek a second opinion; chances are you'll find out they were right all along, and be that much more pleased with them.  If they are unsure about it, you probably should be, too.

[michelleric]

I will look into OSU. Is there a particular doc or any doc in the MS clinic? I will call my PCP and see if he will refer me. However, I guess as far as my records go, I would have to ask my current neuro to send them. That is a bit awkward, don't know how that would go over. I can send my MRI's, but as far as the exams, she would have to send.
Thanks for advice,
Michelle

[Lulu54]

I've said it before here - and I will definitely say it again and again -

The MS Center at Ohio State is nationally recognized.  If you are wanting a second opinion, it is not that far of a drive from Cleveland or Xenia.

They ask to get your records first for review and then they will see you if they believe something neurological is going on that smells like MS.  A doctor has to refer you - you can not call for yourself.

Pastor Dan was just there this week - not MS, and now has been referred to a neurologist at OSU outside of the MS clinic.  

I hope that helps,
Lulu

[slightlybroken]

You and me both lol...I would take one in Ohio, period....doesn't matter where..(Oh..I guess I sound desperate UH?).

Sorry I can't help you but I'll bump your post since it's going to the second page.