Just FedExed My Records to JH.

A board to discuss Revimmune as a potential therapy for multiple sclerosis
Lyon
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Post by Lyon »

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chrishasms
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Post by chrishasms »

I never even tried to convince him. I told him my thoughts and he didn't flinch. My grandpa rest his soul used to say, "Chris, you cannot argue with a fool so stop trying!" lol I was done with the conversation in three sentences then we started talking football lol.

He is a really smart guy no doubt about it. It is his right and his choice. I can't change it but I'm sure as hell allowed to disagree and have my opinion. :P
Lyon
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chrishasms
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Post by chrishasms »

Oh he 100% knows it but he just refuses to do anything. His father even died from MS related complications but he doesn't care.

Some folk Bob, are just really hard headed. I know this Irish-German guy like that. (Me!)
Lyon
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chrishasms
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Post by chrishasms »

Bi Polar...or as I call it- "MS related behavior issue's" LOL
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Jamie
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Post by Jamie »

Yesterday was great, yes.

The most impressive thing was he just spoke plain sense and was very honest.

Especially interesting to me and something I wasn't aware of was that they consider MS to have a similar underlying physiology to SAA and SAA is where they have seen the best results.

In fact he is confidently able to say to someone with SAA that this has a 70% chance of curing you.

Wouldn't it be wonderful if with MS it was the same or better? Only time will tell.

More appointments this afternoon then tomorrow for the hickman and first dose!

Mel's v.scared but coping well, four more days of MS for the next few years. That's the 'endpoint' we're hoping for. Anything better we'll take of course!!!
Lyon
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chrishasms
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Post by chrishasms »

Nope Bob, Dr. Robert Brodsky used the same word with me. They are already saying this treatment cures various autoimmune diseases. They are hoping to see the same results for MS.

Crazy I know but if the best hospital in America 8 years in a row says it's true who in the hell am I to argue?
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Jamie
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Post by Jamie »

Even better for those who do get their disease back there's no reason not to do this agian if something better hasn't come along.

He used the example of someone with MG, after 4 years it came back. She did the treatment again and is again disease and drug free.

Of course if your MS came back every six months then you wouldn't really keep doing it.

The copaxone part is IMO the most exciting bit.

It makes perfect logical sense and you would be preempting the 'trigger' in essence.

I don't have any religion at all but I've been tempted to thank god for these people.

Brodsky is a director according to his business card and he is the first doctor we've seen through all of this that was sitting waiting in an exam room for us, usually it's sit there and wait for 45mins for a 5 min cursory chat.

He didn't even seem to mind my dumb questions.

To be fair though Dr. Kerr was also awesome as was Dr. Hammond and everyone else.

She couldn't be in better hands.

Right, we're off to register and sign all the consent forms, admitted tomorrow.

Weather is fabulous in Baltimore !
777
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Post by 777 »

I see so much talk about copaxone. I was on copaxone early on in my disease. I have no activity at all or new lesions in years. I think the reason copaxone fails a lot of people is because they dont stick with it long enough to give it a chance, that and they dont like injecting everyday.
chrishasms
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Post by chrishasms »

Go to Bo Brooks in Canton for dinner tonight. It's a great way to celebrate.

Have fun and good luck!! lol
777
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Post by 777 »

I got a call today, I have to go to baltimore for tests. I thought they did all the testing localy. At least they have considered me for treatment.
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Post by chrishasms »

They need to see you in person and agree that you have MS. Evidentially they liked your MRI.

If after the initial visit they say yes and you go home and get all the lab work done.

I have not heard of anyone who has had to go to Baltimore to be told no.

From what I have been told you need to have an active MRI for them to see you at all!

Congrads!
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