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Posted: Sun Jun 08, 2008 4:06 pm
by Terry
Yeah Robbie! Go for it! I think I will be as happy as you are when you are on the mend!
Terry
Posted: Sun Jun 08, 2008 6:38 pm
by RedPenguins
I'm so glad more people are finding out about this.... I hope this is available more readily to people in the future.... It is hard - since I know I had to seek it out - and feel like I "stumbled" onto it - no one told me - including my docs.....and I go to one of the top MS places in southern california! Yet, all the docs would say is that I'm rapidly declining.
I would think JH wouldn't mind where you are coming from. And the cost is AMAZING and outstanding....especially when you consider that the insurance rate is SO much less than the cash figure. I'm very glad I have (good) insurance. Actually - let's see this week when I hope to hear from them about my approval. 
I say - send your records over - the more the merrier!
~Keri
Posted: Sun Jun 08, 2008 8:50 pm
by Brainteaser
Thanks for your responses. It sounds like JH might be a option for OS patients although locals would have every right to feel a bit miffed.
Sandonpoint - go ahead and be as sarcastic as you like. Sorry to tell you but the way the US$ is dropping against our currency, $80k will be about 2 weeks wages before long!!
Seriously, when your health is at risk and there's an excellent prospect of success, why wouldn't you invest in your future? In the end it's the results which will count.
Phil
Posted: Sun Jun 08, 2008 10:18 pm
by RedPenguins
Phil - I'm begging and borrowing $ to be able to have this treatment. Actually, I wonder if I resorted to stealing and ended up in jail if the government would then pay for my treatment?! Hmmmmm. Makes you think!
I don't know that locals would be upset. Surely there's enought poisonous curing drugs to go around ;)
As or 80k....I can pretty much only get two tanks of gas for my car for that price!
~Keri
Waiting for an Appointment
Posted: Mon Jun 09, 2008 4:24 am
by susan
I'm glad I was able to provide you with a little gleam of hope.
At times, I am unable to do just that. Thank you for giving me hope.
Off subject; Does anybody know anything about neurons and MS? My neuro mentioned this-as I presently do not have any active lesions, the continued disibility is caused by the neurons disipating; not good news-
Posted: Mon Jun 09, 2008 4:55 am
by robbie
JHH won't be treating SPMS (me) until the fall.
i wonder if they will have a maxium EDSS to limit being accepted.
Re: Waiting for an Appointment
Posted: Mon Jun 09, 2008 2:36 pm
by Lyon
.
Waiting for an Appointment
Posted: Tue Jun 10, 2008 7:04 am
by susan
Hi Bob,
I have increased and continued disability. My legs are weaker and now my right arm is on its way to useless. My balence is non-existant not to mention, bladder issues and swallowing problems.
It is very difficult to stay positive, but I'm trying.
Posted: Tue Jun 10, 2008 9:10 am
by chrishasms
Well I have not had one new symptom in 3 months. I had nothing even close to that kind of success with a crab.
My EDSS is down and my weight / body fat percentage has become less lopsided with my activity now.
I used to take 4 hours of naps a day and take none now. I have no fatigue anymore. None. Zero. Zilch. Gone. Nadda.
There has been one drawback to this treatment. Because I am getting better I can actually feel I have Carpel Tunnel now from using a cane.
I figure if you diag yourself instead of letting JH look at your records you are being awfully nice by giving someone else your spot. You will never catch any of us who are feeling better after taking your place in line saying we regret it.
Posted: Tue Jun 10, 2008 10:04 am
by robbie
Well I have not had one new symptom in 3 months. I had nothing even close to that kind of success with a crab.
chris is it rr ms that you have? and how many attacks would you have in three months?
Posted: Tue Jun 10, 2008 10:55 am
by chrishasms
Clinically speaking...aka MRI activity wise I had RRMS. According to their cute little disability chart I was PPMS.
I had one exasperation in June of 2004 and never got better. Every MRI I ever had up until now had SOMETHING active in it. Clinically speaking I was never not under attack. MS symptom wise I was constantly getting worse.
As far as "for now"...lolol!!!
I doubt I need to worry about the MS anymore. This is a treatment that can be done up to around 7-10 times in a lifetime...maybe more. Age does play a factor. HiCy is not just run of the mill Cytoxin. If my MRI does reactivate I will go get this again. Getting sick for three days is way better than taking a worthless shot that makes you feel ill and you still get worse.
Speaking of getting better...I will have some vid of me up later and some pics of my MRI on my site later. The vid will be the difference in clonus in three months. I'm off to go lay in a tube and get some good news!! It feels so good to look forward to an MRI lol.
Posted: Tue Jun 10, 2008 10:59 am
by HiCy
Kyle,
I would not be so down on the treatment. Having gone through this I would have to say that it is not for everyone and the results will vary. I still think it is better that some of the other CRABS especially if they are not working. I believe that once there is more data, especially with copaxone the numbers will look pretty good compared to the other treatments.
HiCy
Posted: Wed Jun 11, 2008 5:53 am
by chrishasms
Well for the first time in my MS career I freaked in the tube. 10 or more MRI's as well. I will try in an open MRI on Fri.
DAMN IT
The dude who does all my MRI's couldn't believe it either. He says it's my body saying it's finally OK and doesn't need to be in that tube anymore.
I know he is right.
---Brett-er-HiCY read your emails! lol