Ohio State's MS Center

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Ohio State's MS Center

Postby patientx » Tue May 26, 2009 5:39 pm

Anyone have any experience there?
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Postby Loobie » Wed May 27, 2009 3:54 am

No from this Buckeye who went there! You hear things about it, that it's good, yada, yada. But I'm sure like everywhere else the experience is going to be personal. But you know they aren't hurting for dough since they are just so huge, so one would think they'd attract the 'brightest and best' from the area. Where you from anyway?
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Postby Loriyas » Wed May 27, 2009 7:46 am

I went there for a short time before I moved to Naples. It was okay but at that time (over 6 years ago) they were overwhelmed and short staffed. I don't think that is the case any longer.

FYI-The Accelerated Cure Project and The Ohio State University now have a repository at OSU. The information is:

The Ohio State University Medical Center
Multiple Sclerosis Center
1654 Upham Drive, 445 Means Hall
Columbus, OH 43210
Principal investigator: Michael Racke, MD
Study coordinator: Lisa Hafer
Study coordinator phone: 614-293-7877
Study coordinator e-mail: acp-study-osu0807@acceleratedcure.org


If I were in Ohio now I would definitely make an appointment at OSU. There seems to be quite a bit of research going on.

Lori

BTW When I come to Columbus this summer I am planning on going into the the center to donate into the ACP repository. I was never able to do so before as there were no centers anywhere close to me.
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Postby patientx » Wed May 27, 2009 7:54 am

Lew,

So you went there at some point, and the experience wasn't positive?

I'm in Maryland - I know, why would I want to travel so far? Well, I've been going to UMD here, but I worry they are just too laid back in their treatment approach. The other option is Hopkins, which obviously has a good name, and I have heard good things about their MS center. But they aren't real big on clinical trials, and I think that might be a good option to have. So, I checked the web, and it seems like for going out of state, it's either west to Columbus or south to Tennessee. A drive to Columbus would be long, but not prohibitive. I've checked OSU's website, and it seems like that have a good number of nuero's, and a lot of stuff going on. Don't know how good they are, though.


Loriyas:

Thanks for the info.
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Postby peekaboo » Wed May 27, 2009 8:10 am

OSU is currently recruiting for a few ms studies...go to clinicaltrials.com and sort by ohio state to view, if interested
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Postby Loobie » Wed May 27, 2009 8:32 am

X,

That "I went there" was misleading. I meant I went there as in attended college there. Sorry for the confusion!
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Postby patientx » Wed May 27, 2009 10:26 am

Gotcha. Your post makes a lot more sense now.

By the way, Lew, when you tried to contact OSU about the CCSVI research, did they politely decline, or just blow it off?
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Postby Loobie » Wed May 27, 2009 11:06 am

Complete blow off. I didn't try the MS folks though but rather the vascular surgeons. They got emailed, faxed and hounded on the phone and I got voicemail but never got a call back.
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Postby Terry » Wed May 27, 2009 3:21 pm

FYI-The Accelerated Cure Project and The Ohio State University now have a repository at OSU.


Good to know, Lori. I drove to Atlanta about a year and a half ago to the one there. They haven't called me to come back yet, but it is good to know that if they do I can opt to drive 2 hours rather than 8 or 9. My daughter and I had a great time in Atlanta and it was well worth the drive, but Columbus certainly makes more sense for me.
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Postby catfreak » Wed May 27, 2009 7:48 pm

Loriyas,

Where in Tennessee were you thinking about going? Just curious.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

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Postby patientx » Thu May 28, 2009 4:19 am

Cat,

It was me who had written about Tennessee. Thinking about it a little more, I'm not sure of specific places. Some of the posters here have written good things about their doctors in TN, but I would have to go back and search for specifics. I guess there's also Vanderbilt.
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Postby catfreak » Thu May 28, 2009 8:56 pm

PX

The reason I was asking, my dentist has MS and she uses Vanderbilt. She says she has a good doc but he is all about her staying on the Rebif since her MRI's are better now. I think Dr is Dr Moses.

I feel for her because the Rebif is making her feel so very bad.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby patientx » Fri May 29, 2009 2:11 pm

Thanks for the info CF.

Maybe I'm asking for too much, or looking for something that's not there. But when I complain to my MS center about new symptoms (admittedly fairly minor) or my last MRI showed a new lesion, their response is, "well MS progresses, so you just have to expect that. And the standard injectibles aren't advertised to do that much, so you can't say the medicine is failing to work and a switch is in order."

Now, I could almost understand if they said "one new lesion isn't too concerning, and not reason enough to change meds." But that's not what I'm hearing. And, since I'm still fairly early into all this fun, I'd hate to miss a window of opportunity for being aggressive with treatment.

Anyway, like I said, maybe I'm expecting too much.
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Re: Ohio State's MS Center

Postby mommy2em » Fri May 29, 2009 7:38 pm

patientx wrote:Anyone have any experience there?



Yes I actually am a patient there. I was dx in Dec 2008, I live in Columbus. Luckily, OSU's MS clinic is very close to my home so I don't have to travel far. All of the Drs at the clinic are very qualified and have done lots of research, etc.

Let me know if you have any ?'s
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Postby patientx » Mon Jun 01, 2009 6:52 am

Mommy2em:

Thanks for the response. If you don't mind my asking, which doctor are you seeing there? And what is their general approach to treatment (of course, each doctor there may be different)? Is it the standard "here are the FDA approved injectables - pick one." Or do they take a more active approach?
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