We just got back home from Johns Hopkins.

A board to discuss Revimmune as a potential therapy for multiple sclerosis

We just got back home from Johns Hopkins.

Postby Jamie » Thu Mar 06, 2008 8:15 pm

It was quite the experience.

We met with Dr Hammond initially who had a much clearer picture of Mel's status than her own neurologist.

We'd brought the mri's on a CD so he took them away for ten minutes or so. Prior to that he gave Mel a bunch of tests with some surprising (and disappointing) results.

Carrie then came in and introduced herself. She's great.

Then Dr Hammond came back with the famous Dr Kerr. It's weird, I've read so much about him and Dr Brodsky that I was almost star struck.

He went through the options, explained that Mel's MS is aggressive, there is a lot of lesion damage and a couple of black holes.

We talked about Tysabri and other options, everything but HiCy.

Eventually I blurted out ' but isn't hicy on the table?'. Turns out he was joking by not mentioning it, amusing now but at the time I was starting to feel despair!

Long story short, Mel is a good candidate and she decided to pursue the treatment. The coordinator will be emailling her in the next few days to get things moving.

It was a bitter sweet visit, very upsetting when told that her MS is progressing rapidly and instant hope for an end in sight when hicy was discussed.

I'll keep you all posted.

We could be in Baltimore in 4-6 weeks if all goes well with the insurance.

Even if it doesn't I'll remortgage my house if need be.
Last edited by Jamie on Sun Mar 09, 2008 2:15 pm, edited 1 time in total.
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Postby sandonpoint » Thu Mar 06, 2008 9:56 pm

I'm extremely dissapointed to Mel could be doing better.

If is not a rude question, how much does the complete treatment cost at JH?

Regards

Sandon
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Postby 777 » Fri Mar 07, 2008 6:25 am

How do you get your MRI's such as old films transferred to CD's?
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Postby Loobie » Fri Mar 07, 2008 6:26 am

Jamie,

Best of luck to you and Mel! Sorry to hear about her course, but very enthusiastic that maybe she can have some hope! Please keep up posted.

Lew
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Postby chrishasms » Fri Mar 07, 2008 7:39 am

123
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