Bmt

[msella]

My Mum followed this forum and got the idea that going to India for a bone marrow transplant would 'cure' her MS. She underwent this procedure 3 weeks ago and died yesterday from direct effects from this treatment. Bless her beautiful desparate soul. Anyone considering this needs to listen to the scientific evidence that does not support this for many MS patients. BE WARNED people, and although we all want to cling to hope, you cannot ignore the facts because it could cost you your life.

[ActiveMSers]

msella, I am very sorry to hear about your mother. And thank you for reinforcing the warning, one that I have long repeated. This is not a first-line treatment or a second-line treatment. I feel this is a treatment that one should pursue only when all options have failed. Even though the risk of death has fallen to about 1 percent, that is still a high number and why more research is needed to help make it safer.

For aggressive RRMS, when treatment options have failed, HSCT can be life saving. But with it comes risk. Again, my deepest condolences.

[krollmi]

This is my first post to your blog, and I just had to comment. As a medical professional (a dentist, so take my information with a grain of salt) who has MS I have read your blog and in no way have I gotten the impression that you see this as a cure all for everyone. The most difficult thing in medicine is to convey pertinent information and help a patient understand the myriad of confusing and often contradictory information and make an intelligent informed decision. No matter how hard you try, people will hear what they want to hear and ultimately do what they want to do.We all have gone through difficult and un-explainable situations (MS diagnosis) and you look for something or someone to blame. I think your blog is refreshing and positive among the world of negative doom and gloom MS blogs. An informed individual who read your blog would realize that analogous hematopoietic transplants have inherent risk and should be performed by a qualified team of medical professionals who are part of a reputable institution. It happens all too often that people seek treatment in other countries that are not approved in their own country with less than ideal results. What happened is terrible, and a tragedy. The reason we have the slow and cumbersome clinical trials and drug approval processes is to protect the patient (well thats why it was originally put into place). Anyhow, now I am rambling! Keep up with the blog!

[ActiveMSers]

Thanks, krollmi. I do my best to present what I know in an unbiased, straightforward fashion. I've mostly given up on correcting misinformation on other websites (and as you know there's a lot), but it's still frustrating. As you said, people will believe what they want to believe. I just hope people vet, as best as possible, what they read on the web before pursuing aggressive treatments like the one I underwent. Even what they read here. It's just smart.

Great to meet you!