rebooting at JHH

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 127

Even better 777.

Cyclops just bumped the contact post up mate on the main list of posts within the revimmune bit, should be easy to find now.

Cyclops · Getting to Know You... Joined: May 13, 2008 Posts: 15

Merci beaucoup mes amis. I will contact Carrie as soon as possible.

o-)

Cyclops · Getting to Know You... Joined: May 13, 2008 Posts: 15

Just spoke to Carrie. She was very helpful and has asked me to send my records in. Here's a little summary of what she said:

1. At this stage they would only be interested in seeing basic records specifically the radiologists reports not actual MRI scans.
2. They are most interested in people who have active enhancing lesions as they believe that these people would do best.
3. Its still possible to take part in the current phase II trial though I guess its depends whether you're eligible.
4. Out of pocket cost is $80,000 though most get part of this back.
5. If they accept you, it can take around 6 weeks for an initial appointment followed by another 2 months or more before treatment.
6. The phase III trial is currently planned for next year.

I guess none of this is new info but thought I'd share it anyway.

o-)

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 337

This is quickly being covered by all insurances so if you have insurance this will cost you only what insurance doesn't cover and the cost of living for one month.

The 80k is only if you don't have insurance.

777 · Posted: Fri May 16, 2008 1:17 pm Post subject:

Thats why I am puzzled that they want to see me, I asked Carrie twice and talked to Dr. Hammond once. ButI have yet to recieve a call for an acutal appt. That's why I hope I dont invest the money to fly up there just for nothing. Confused

Although I wouldnt have to worry about debating on having the treatment or not. lol Smile

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 127

yeah our medical cost was $4500 + prescriptions

Lyon · Posted: Fri May 16, 2008 3:16 pm Post subject:

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 127

medical only, i.e. that's the bill we pay Hopkins.

the 'soft' costs were around another $7000 for accommodation, food, transport, parking etc, etc. It could be done a lot cheaper, it's just I'm a snob and we went first class all the way!

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 337

I hear ya, we went around 10k w/ the JH costs but I had to live life.

777 · Posted: Sat May 17, 2008 11:50 am Post subject:

I filled out some paper work late afternoon for tysabri. Since I have MS symptoms creeping back in on me, weak legs etc... I cant wait for treatment at JH. That and the fact nobody is calling me to set up an appt even though I was told they wanted to see me.

I realize they are busy, not their fault. But no guarente this even works or will be a benefit for me.

I was told anytime you mess with the immune system, it's dicey business. I just wish we heard from others that had this done, same more dont keep blogs. One would think out of the number of people who had this treatment more than a couple we would blogging it.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 337

A lot of the people getting this are getting it because they have neuro's helping them. A good deal of them do not even have the internet.

I'm sorry they have not called you. I was very proactive and had her tell me who to call. I didn't wait for them to call me.

The simple fact of the matter is this: Every person who is getting this is happy they have done it. Go to the Tysabri forum on here and see how many folk are as happy.

If you are worried about your immune system WHY ON EARTH WOULD YOU MODIFY IT WITH TYSABRI!!?????????

I'm sorry it's too hard for you to believe the facts but all the folk who have done this so far have had their MS stop progressing or if they are not too far gone, are getting better.

I was there in HiPop w/ Steve from Virginia who couldn't walk and was worse than me when he got there and 2 weeks later was able too walk with his cane.

I was wheeled into JH and I can walk 100 yards now. This week I have stopped using my cane as much.

I really think this is a treatment for those who are proactive and want it bad. Maybe they never called back because they didn't really believe you were serious.

It's just my opinion and I don't mean to be rude.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 337

http://ca.us.biz.yahoo.com/bw/080313/20080313005232.html?.v=1

HA LOVE IT!!!

777 · Posted: Sat May 17, 2008 12:16 pm Post subject:

They know I am serious, I talked to Dr. Hammond ( for about an hour and a half! ) and I have talked to Carrie 3 times. First time was when she asked for more MRI's, they wanted my history. The last 2 times I asked about my status and she said they definatly want to see me and someone would call in within 2 weeks, well 5 weeks have passed.

Who actually calls? A doctor or someone who just sets up an appt?

Only thing I can think of is maybe they are stack ranking, but they should have someone call and let people know. It's difficult for me to make arrangments, getting a hotel, someone to watch the kids etc... when I don't know what's going on.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 337

777

If I was you I would leave message on their machine 2 times a day everyday until they had the shit straight.

mrhodes40 · Posted: Sat May 17, 2008 2:08 pm Post subject: