Aussie TV news story: Aggressive MS stopped/reversed with HSCT

[ActiveMSers]

This is the story of Ben Leahy. His very aggressive MS was stopped and his numerous brain lesions are now gone a year after HSCT. He is probably the most appropriate type of candidate for this type of treatment. Malignant MS with poor prognosis.

http://www.youtube.com/watch?v=1FOO2rcQsvY

[CarmelTurner]

Ben

I uploaded this dave. This is the young man that went before me. This ACA segment gives a really good snap shot of why the treatment you and i had BEAM, has stagnated here in australia. This is due to MSA not supporting it. The father in the segment even details how MSA called the parnets repeatedly to emphasis dont do it. It has also stagnated due to the "failed" trial in 2001. Which if you read the research paper was intended to confirm if the procedure was safe. Which considering all 4 survived the treatment it could be stated it was a 100% success. The 2001 trial was closer to the MIST trial not the HALT trial. They unfortuantly though choose the wrong candidates and hence the trial did not have the expected outcomes.

Btw this is my tv apperance

http://www.youtube.com/watch?v=KEHgw...layer_embedded

[CarmelTurner]

Australia

I just recieved devestating news for australia. The only hospital that was offering this treatment has shut down offering this treatment until MS Australia funds the trial.

[Carmel]

Update about canberra hospital

Hello all i have not come back for a long time since posting the above mostly as i have been busy helping people actually gain access to this treatment in australia and abroad. One person in australia stumbled upon this and sent me a message, Can i assure all that read this that canberra hospital IS performing HSCT for MS again and there was a small one week pause due to politics. Canberra hospital was attempting to squeeze money out of MS society and the government and since then it has been full steam ahead. Canberra hospital is a lot easier to get into compared to perth hospital that has over a 2 year waiting list. unfortunately most ideal candidates do not have that long to wait so we have been assisting people gaining access to canberra hospital and treatment overseas.

[ActiveMSers]

Thanks for the update, Carmel! It's great that you are helping others to get access to this treatment. Keep us in the loop; I really appreciate it.

[JudyW]

This was an amazing and inspiring story. One thing I found curious is that the treatment was done on someone who was not ambulatory. From your story,Dave, and from reading the requirements of other treatment centers, having some ambulatory ability seems to be a prerequisite for treatment. So I confess confusion about this, though if HSCT is available to anyone this would be great.

[ActiveMSers]

Ben's MS was extremely aggressive, potentially life threatening, and his docs felt an SCT was his best option and that the risk was justified. Ideally he would have had more mobility, since being able to recover from the treatment is paramount. Fortunately he was young and previously active, meaning he was otherwise reasonably healthy. And because his MS was still in the early active stages, his odds of recovering abilities were actually far higher than for someone with MS for 20 years. This aggressive approach has been done in other similar cases with success.

While lack of mobility doesn't preclude HSCT success, it does amplify the risks.

[Carmel]

Bens case

Ben case was the precedent that we all australians needed. It started the MS Australia trails in perth. Also the unique thing about ben is all the decision makers were about to retire. They no longer were putting 25 years income on the line....just 1 years.....since ben treatment all have decided to put off retirement....in the story andrews states that he thought of doing it before but "we neurologist are a conservative bunch", he has placed person after person into a nursing home due too his concern over his reputation, now he is fighting for his legacy....his father was also a well known GP in canberra. I very small town

[Carmel]

My edss

My edss score was 6.5 progressing to 7.0 before treatment. I could not take a single step without holding onto something.....i now walk about 1km...

Ben jogs with his mother each day, today....he is a young man that had the best experience of ms.....a bad memory that lasted no longer than a year.....he is now back at school and studying....


HSCT success on reversing EDSS scores depends on how long the person suffered that disability rather than the degree of disability....the shorter the better