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Does anyone have any 1st or 2nd hand info with regard to this procedure?

I'm circling the drain, 3 new lesions in 6 mos MRI 3 weeks ago, definitely more since then, I'm really speaking as if I've had a stroke, IF I can find the words to say in the 1st place to slur them out.

I work with someone who has been badgering me to sontinue trying to push myself into the program here at Northwestern.
Couple of issues, I was not comfortable with Dr. Burt (sp?). Didn't like him right from the get go.
In addition, as it turns out, the magic cure that she has been touting so forcibly has not been without majoe complication over the years.
Currently she is on another round of cytoxin, i don't know how many came before, this added to rounds of high dose methyl pred.

This does not sound like the dream I was hoping for.

I can't imagine that the immune ablation at Rush would have substantially different long term results....

According to my Neuro, these or Tysabri are my only options.

I'm afraid of Tysabri as I have not yet totally weaned from oral steroids, perhaps by the end of the year. BUT, a friend of mine just had her 2nd infusion and reports that she hasn't felt better in a couple of years she's quite a bit youger than I....late 20s as opposed to mid 50s

Input or direction anyone??????

Also, has anyone gone to the MS Center at NYU? Or heard good or bad about it? I have somewhat of a 'connection' there, and my family lives in the area, so travel is not a big deal.

I'm really at a crossroads here, the measly 20 hours a week I work in order to get insurance is becoming more and more of a challenge.

Hope everyone' well...[/u][/i]

Really sorry about your recent problems msmything. Have you considered Campath? From what I have read Campath seems to be one of the most promising treatments out there although I know it comes with it share of side efects too. I do not know what to say about your question regarding stem cells. Did you try calling NIH? I think they are recruiting for stem cell trials. Stem cell research is moving faster than I originally thought it would two years ago and I truly believe we are going to see some amazing breakthroughs in the next five years but I do not know what to say as far as you getting the treatment now. This is just my two cents but I would advise you to stay away from the clinincs overseas. Some of them may be legit but I have heard of some real horror stories as well from a few people. Let me know if you need some info. on the NIH trials.

msmything wrote:In addition, as it turns out, the magic cure that she has been touting so forcibly has not been without majoe complication over the years.
Currently she is on another round of cytoxin, i don't know how many came before, this added to rounds of high dose methyl pred.

This does not sound like the dream I was hoping for.

I can't imagine that the immune ablation at Rush would have substantially different long term results....

What is the magic cure that your friend is touting?

While it hasn't been a miracle for everyone, some have reported good results form the immune ablation (HiCy). I think Rush may be the only place doing it now - Hopkins stopped for some reason.

I concur with Scorpion on the Campath. Again, while it hasn't been the miracle cure for many, many others have reported very good results. The trials stopped enrolling long ago, but maybe you could find a doctor willing to prescribe it off-label (some members in the Campath forum mentioned doing this).

I think the Cleveland Clinic is also doing a stem-cell trial.

My friend is so singleminded about the stem cell treatment at Northwestern, that as far as she's concerned it's the ONLY tx to consider, and I'm a fool for not doing it.
In her defense, she had a son whom she watched die from MS, he was primary progressive, and went from walking to bed bound to death in record time, so being diagnosed after his death, she wanted to be as aggressive as possible, as quickly as possible.
The thing with this 'trial' is that it is not funded by a drug co., so if your insurance co. declines your participation your screwed if you're still alive.

I feel so lousy that I'm seeing life thru kinda desperate eyes myself lately. However, as everyone is unique, my 'case' has resulted in tremendous cognitive loss, 3 large 'black holes' and general stupidity. I have alot of speech difficulty, sometimes sounding like a stroke victim.
BUT, BIG BUT, I can still walk fairly well. People don't know that I am using my abdominal and quad muscles to move my leg in an approximation of a normal walk. So, when people see me, they say the wonderful "oh, you must not have it so badly' I have a friend who...blah blah blah. I never heard the end of that sentence cause I'm screaming inside.

but pt x I would NEVER consider overseas 'clinics' i can still see the line over which I will not step...

I don't know, I'm just sooo tired of fighting so hard, then I put myself in the place of some of the patients I work with ( I work in an ER), and I straighten my ass out....and get happy with my stumbling slurring self, and go choke on a snack.

Thanks for your replies, this site is a great touchstone,

One thing you have not lost is the abilty to communicate through your writing! You really expressed yourself well in your posts!

MSmything, have you checked into being screened for CCSVI? See www.ccsvi.org and Facebook page "CCSVI in MS", as well as the forum here on CCSVI, for information and support. To me, this approach definitely holds the most promise.

Very best of luck to you.

I've always wondered is all of the testing, and then the procedure itself self pay?

I know for a while volunteeers were being recruited, but under this anount of publicity, I'm sure Dr. Zamboni has all the willing subjects he'll ever need in order to publish.

I actually had to pay for groceries using credit card, I haven't got much in the way of options there...

I would look pretty long and hard at Tysabri and the numbers that scare you.

yes Rainer, the numbers on Tysabri are terrifying. I do know someone who has just had her 2nd infusion, she says she hasn't felt this good in years.

However, if it goes bad on you, apparently you're lucky if it kills you, doesn't just turn you into a vegetable.

I have been steroid dependent for 15-16 years due to a different autoimmune disease so it's not an optiion 'til I've been steroid free for many months, that's why the immune ablation at Rush is the preferred road should I start down that path. (did I mix my metaphors?)

Dunno.....

I actually meant the numbers are not as terrifying when you look at percentages.

Ask your neuro to lay out percentages of chance to harm, chance to help, chance to do nothing. Factor in availability, FDA approval, cost.

You could make a spreadsheet of what you're considering with those numbers. Obviously it isn't purely mathematical but it forces you to quantify your ideas and pushes you toward objectivity.

rainer - suggesting that Tysabri is viable treatment - knowing full well the horrific brain disease that some patients have reported - after taking Tysabri ..... is irresponsible

A risk I would NOT consider.




Mr. Success

I'm with patientx, maybe check out the Cleveland Clinic trial. All the other stem cell trials in the US appear not to be recruiting patients right now (other than Northwestern). It's only a phase 1 trial, but that means there is no placebo to worry about.

http://www.clinicaltrials.gov/ct2/show/NCT00813969


On rainer and tysabri, I could be wrong, but I think PML has only been seen after at least 12 infusions (assuming you're not on some other immune modifying drug), so if you decide to take tysabri for less than a year, it should be very safe.

dig - bad advise . After 12 infusions ?

I could be wrong also ...... but from what has been reported .... there is a significant chance of getting a horrible brain disease - from Tysabri

I suggest a look at the Tysabri posts here at TIMS.


But do as you like ........ it's your life



Mr. Success

msmything wrote:I've always wondered is all of the testing, and then the procedure itself self pay?

I know for a while volunteeers were being recruited, but under this anount of publicity, I'm sure Dr. Zamboni has all the willing subjects he'll ever need in order to publish.

I actually had to pay for groceries using credit card, I haven't got much in the way of options there...

Msmything:

Pretty much all of the doctors doing the CCSVI screening/treatment have long lists of willing, paying patients. So none of them will have trouble recruiting volunteers for studies. CCSVI might hold great promise; but it doesn't have near the data backing it up that some of the other treatments have.

As for Tysabri, PML is a serious risk. But like Rainer said, you should talk with your doctor about this. Some people are real down on Tysabri, while others swear by it. It sounds like your MS is pretty aggressive, so something strong probably is in order. You could also ask about pre-screening for the JC virus, and if this helps lower the risk of taking Tysabri.

If you're still getting new lesions, it sounds like you've still got inflammation going on. Both HiCy and Campath seem to work best at this stage.

Whatever you decide, you mentioned that you're still holding on to your health insurance through work. I don't think anyone has gotten any of these treatments (stem cells, CCSVI, Campath off-label, HiCy) without insurance paying the bulk of the cost (though their might be a few millionaires out there).

I received an autologous SCT in March of this year as part of the HALT-MS Phase 2 clinical trial (now closed). You can read about my experience at www.ActiveMSers.org , which I started four years ago to help inspire people with multiple sclerosis to stay active physically, intellectually, and socially.

You'll find the stem cell transplant information in the forums under Dave's SCT Journey (login required). I discuss everything from the costs and risks to the chemo side effects and 3-week hospital stay. I also include links to blogs and videos of other participants.

Hang in there,

-Dave