Just FedExed My Records to JH.

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

Postby chrishasms » Sun Apr 20, 2008 8:13 am

This could weaken a bad heart probably. My vitals haven't changed one bit and if anything improved.

I'm doing Yoga, working out and going for walks everyday. I'm getting my heart rate up and aside from my endurance sucking I'm not having any ill effects.

If you look back in these posts you will see a list of all the pretests I needed to get done. My heart was thoroughly checked so it's not an issue.

I feel better now than I did a month ago for sure. I still re-iterate that living with MS is not living so now that it's inactive I can start to live again. Avonex has the same risk rate as Hicy, and less of a reward.

I'm not plugging here but check out the blog on my site for the last month. EVERYTHING we learned by going through this is there and a lot of facts we learned as we went. I see a good deal of questions asked here, we have answered there.

It's peanuts if you qualify. It's just a bad flu they drug you through and then you wake up feeling better.
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Postby Xenu » Sun Apr 20, 2008 8:21 am

Which threads here(i.e. - in this forum) list the tests to which you were subjected pre-HiCy?
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Postby Lyon » Sun Apr 20, 2008 8:22 am

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Postby chrishasms » Sun Apr 20, 2008 8:32 am

I have just been informed Medicare may be covering this as a viable option as well now!!

Thank God!! The gov't says yes!

Now to get the Neuro's on board!!
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Postby Xenu » Sun Apr 20, 2008 8:35 am

Chris,

That is AWESOME.

I was reading back in some of the threads here, and I noticed that the user "HiCy" appears to have had Blue Cross & Blue Shield as his/her insurance carrier when s/he underwent the Revimmune protocol. If this is true, then according to what Jamie says earlier in the post, they have to pay for me to have this procedure done, since they already approved and paid for "HiCy" to have it done.
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Postby chrishasms » Sun Apr 20, 2008 8:39 am

Yup, as long as the pic you have is your RECENT MRI, I would say (and I'm not them or a doctor) it is active and you should get your bag packed.

HiCy is a he, and he was the one who started all this for me. I owe a lot to him.
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Postby Xenu » Sun Apr 20, 2008 9:00 am

W00t!

Thanks for letting my know HiCy's correct gender. It helps. (LOL)

I actually have a feeling that the team at JH might ask me to undergo another MRI before they give an answer. I had two MRI's within the past 9 months. One was last July (when I was first diagnosed), and it did show active lesions. The other was in early October, just before starting Rebif. There were no active lesions on that scan, but (ironically) like two weeks later (and into the first or second week of my Rebif therapy) I had another flare-up, which would indicate active lesions.

I haven't had any flare-ups since then, but there's no way of saying what is going on in my brain. And given that the most "recent" MRI is over 6 months old....

They are probably going to want to re-scan within the next couple of months and see what is going on.
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Postby pvns2005 » Sun Apr 20, 2008 9:04 am

Did not mean any disrespect Lyon (Bob) but what gets me through ever single minute of ever single day is to stay positive. I have been kicked around with the Tovaxin trial and I still did not get mad I just moved on to the next and stayed positive.

Xenu,
You have to have a MRI within 3 months of the brain, cervical spine and thoraxic spine with and without GAD. It took me about 3 hours in the MRI machine.

Chis S.
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Postby chrishasms » Sun Apr 20, 2008 9:12 am

Bob I hear hear you are saying but at the same time a chunk of folk email me on my site and here all complaining about MS. Then another viable option presents itself and they get mad because some one is feeling good, and others are feeling good as well!

The only difference is with Hicy someone needs to do the legwork to get this done and their own neuro will not not not not do it for them

I have a good feeling most of this site is made up of RRMSers as they are 85% of the population w/ MS.

My frustration is not with those who can't qualify but to those who complain about how I feel and how I report it. They may qualify and may be able to feel like I am right now but rather than finding out for themselves it's way easier just to sit and bitch :P

I've said it 100 times that if you don't qualify I'm sorry. If you don't or don't know if you qualify don't bitch me out via emails dragging me down! lol
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Postby Xenu » Sun Apr 20, 2008 9:25 am

PVNS:

Does this mean that the Hopkins team will do an MRI on me or will I have to go haggle one out of my regular neuro, who is completely opposed to HiCy and is unlikely to be very cooperative?
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Postby Xenu » Sun Apr 20, 2008 9:27 am

Chris,

I think that, unfortunately, a lot of people both qualify for HiCy and are too afraid to undergo it. (Not a criticism of those people, just an observation.) So their natural reaction is to become frusterated and displace those negative feelings onto you (i.e. - instead of being pissed at themselves for being too scared even when a cure is in sight, it's easier for them to project and lash out at you). Does this make sense?
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Postby Lyon » Sun Apr 20, 2008 9:28 am

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Postby pvns2005 » Sun Apr 20, 2008 9:33 am

packedby776 wrote:PVNS:

Does this mean that the Hopkins team will do an MRI on me or will I have to go haggle one out of my regular neuro, who is completely opposed to HiCy and is unlikely to be very cooperative?


My Neuro ordered my MRI for me without any problem but my Neuro operates a MS Clinic and I had given him allot of information regarding HiCy and he knows Dr. Kerr. As far as JH doing the MRI, that is a question for JH.

If you and your Dr. cannot manage your healthcare together then you may need to find another Dr. It's a team effort I believe.

Chris S.
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Postby chrishasms » Sun Apr 20, 2008 9:46 am

You can get JH to write an order for an MRI if you ask I think. Just tell them the place you want to go to have it done so they can get the info to them.
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Postby Xenu » Sun Apr 20, 2008 9:53 am

PVNS,

Thanks for your reply.

I will probably just wait and see what JH has to say. It'll either be: "Ok...come down here and we'll do another MRI" or "You need to get another MRI from your Neurologist." If it's the latter I will simply request one and see what happens. If I encounter opposition I will go see another neurologist.

Unfortunately, my neuro's reaction to HiCy was this:
1. In January, I e-mailed her the article about it that came out in Hopkins Magazine. She wrote back: "Let's talk about it at your next appointment" (scheduled for April).
2. I patiently waited 3 months for said appointment, which happened last Monday. When I brought up HiCy, she didn't know what it was, which clearly demonstrated that she hadn't even bothered to read the article I sent her.
3. I briefly began to describe HiCy, and she reacted with the following series of dismissive statements:
a.) "You can't do that! What if you got an infection?"
b.) "If you want to participate in some trials, I can refer you to [Name of Another Neuro] who is more into research"
When I attempted to explain the entire package of care that Johns Hopkins offered, as well as that I wasn't interested in "trials" unless they involved the HiCy protocol, I was met with a statement like: "Well, I'm sure insurance won't pay for something like that, so if someone had a lot of money and wanted to go down to Johns Hopkins, that would be their choice..."

Less than 48 hours later, when I spoke with Dr. Brodsky, I was shocked to discover that insurance paying for HiCy is actually the NORM---not the exception, as my neurologist had insinuated.

I then proceeded to send her more information on HiCy, which she has ignored at least up until this point. I received a phone call referrring me to [Name of Another Neuro] for an appointment in AUGUST.

But if things go well with the team at JH, I was told that I could be down in Maryland undergoing HiCy by as soon as June or July.

Meaning that "second opinion" idea was pretty shitty, indeed. I don't really have time to get into a new neuro before doing HiCY. I am a graduate student, meaning that I can only do this treatment during the summer. (I have no "job security," no guaranteed sick leave, no vacation time, etc., and if I don't make it back to school at the beginning of the academic year, I will lose all of my financial aid due to "breach of contract." So it's either do HiCy this summer or wait an entire year and do it in the summer of 2009.)
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