This Is MS Multiple Sclerosis Knowledge & Support Community

LOL!!!

Haven't you noticed I'm a no legged man in a ass kicking contest!

LOL!!

Ya it's getting hot and my magic number is around 75 in or outside. I still have damage so as soon as it gets hot all the stuff that bugs me comes back but not as bad. I can still walk easier than before but the fatigue can suck if I don't get a perfect nights sleep.

Again, totally heat related. When it was still cool I had nothing. The heat fatigue now is still different and better than the MS fatigue from before.

Hang tough folks I got some bad info. I was told wrongly they were shoving them in as quick as they could. I guess they are getting everyone ready for the Phase 3 and doing the off label as quick as they can.

I know it sucks to say this but - "patience".

Hello-

My name is Susan and I have been reading everyone's entries.

I founde Revimmune myself (not thru my doctor, which really angers me) and am more than interested.

my EDSS score is 6.5 and to quote Marie "I am out of wait".

I have talked to Carrie at JHH and JHH has my file.

From what I have read should I be bgging Carrie for an appontment? She indicated six months to me also, possibly sooner.

I have so much to say-this forum has educated me so much, but i type with one finger so it is difficult to address everything.

At this point my life has become very limited.

This protocal makes so much sense. Its drastic but my life sucks so much (sorry if anyone finds that offensive). I just need one positive.

How do I get to JHH sooner? Thank you.

Susan,

Squeeky wheel gets the grease. You need to be persistent. They have your file but do they have a recent MRI? I would get your doctor to prescribe one for you and get it down to them. It gives you another reason to call Carrie and push your case.


HiCy

Thank you Hi-Cy for your advise.

They have my MRI civical and brain, but not the thoracic. Thank you for your input. I will try using your advise.


Susan

Just wanted to say I spoke with Carrie yesterday and she indicated JHH won't be treating SPMS (me) until the fall.

However, I did find our conservation positive. She is very good at her job.

I think it's great that they are planning on treating it when so many others won't even try.

So they are for sure starting spms in the fall.

Thank God. Simply stated.

This treatment (cure?) sounds very encouraging and I commend those who are taking the initiative to try it. I would likely do it if offered but I fear I might have the wrong MS profile (basically PPMS) plus I'm a bit old and grumpy.

But my key query is whether JH is taking non-USA patients? I read that 777 is from Finland? - I assume this means the place near Russia. So, do people here know on what basis they are taking non-nationals? - ie is it a certain percentage of patients or people from particular countries? Maybe I need to wait until the treatment hits our shores or is picked up by one of our Asian neighbours.

Thanks,
Phil

My guess is that they would welcome overseas patients, but from reading other peoples posts, you need at least $80,000 US Dollars ( Eighty Thousand ) , just typed it twice so you know ;)

$30k plus for your treatment and $50k just in case something goes awry with the chemo and you need intensive care.

But the advantage for overseas patients they dont have to deal with insurance companies , just write out the check or use your black Amex card and your away simple ! <- sorry for carcasm, but its sooo much cash.

My advice for you is start to lobby relevant peeople in your country ASAP.

sandon

In the UK you can lobby your local NHS trust to contribute to treatment overseas if it's not available in the UK.

I'm from the UK. When I phoned Carrie she didn't say anything about it being a problem - quite the oppositte. She was keen for me to send my records.

Cyclops

susan wrote:Just wanted to say I spoke with Carrie yesterday and she indicated JHH won't be treating SPMS (me) until the fall.

However, I did find our conservation positive. She is very good at her job.

I have been viewing site since Feb 2008 and could not log in to respond--oh well...Now I can

I talked to Carrie and she infomed me that JH had my records. Dr. Hammond has called me as well. I was diagnosed RR (as all are) and am now SPMS now--from doctors. I found Revimmune on my own 6/2007 but now out of wait!! Doctors do not recommend this--I am so glad I found out about Revimmune!! Many need to know.

I have 2 children and my husband and I are happily married (15 years and counting) but my lifestyle has changed drastically. My children wish to go swimming at times and, I used to be a liifeguard, I cannot swim or save them as I used to be able!!! SCREAM

JH next stop--as soon as possible. I hope I see many there.

JHH won't be treating SPMS (me) until the fall.

this might just keep me alive.