Just wanted to let you all know I am going to Russia on September 25th this year for this treatment. London was becoming harder and harder because of the strict criteria. Also it is a lengthy process in getting seen, getting another MRI with contrast, being discussed at an MDT to be put forward for HSCT, then if accepted the journey starts. But the process then also seems very drawn out and delays happen due to beds and the fact it’s not urgent plus the drug they use (ATG) has harsher side effects that the one they use in Russia and Mexico. I’ve heard much more positive stories from people who have been abroad and been speaking to people too about their experiences. I just feel I can’t wait for London and the fact the process seems quite stressful, makes me just want to go for it. I want to stop this disease and get off the train. I can feel I’m declining… I have a choice, I can either watch, wait and see or be proactive and attempt to beat this, even if it only gives me another ten years before it rears its ugly head that gets my son to almost an adult. And I get to enjoy his life without the worry of the constant decline. And if it does rear its ugly head and I progress at the pace I have that gives me another 11 years before decline, plus medication may have advanced and therefore I may have more options. So I’m going for it, wanted to keep you updated. Going to do a fresh post too just in case no one sees this bit. Wish me luck
I have an 11year old daughter and I was told this week that I probably have ms. Though my mri results were absent from clinic on my appointment day so I have no idea what is going on, but I am very symptomatic.
I am interested if this treatment that you will have in Russia, what is it that you are having ? X
wishing you all the luck in the world, i think Russias the best place for it,i read up on it a while ago and if i were to have it i would want to go to Russia too Dr Fredrenko is the best.
Best of luck with your treatment in September! You are absolutely doing the right thing I’m sure and in the best place. Sadly I think the NHS is so stretched that a) only a handful of ms patients get accepted and b) the infrastructure is not there to roll it out as a first line procedure c) big pharma companies won’t approve it as it will cause a decline in profit margins through the need for DMDs
I go to Russia for HSCT in May, cannot wait wait to get this life thieving monster out of my body. Not to have to take all these potentially life threatening DMDs that only slow the progression and not stop it.
aHSCT is a bone marrow transplant using your own stem cells, its a procedure that ablates your immune system with high dose chemotherapy then with your own stem cells starts to rebuild a brand new immune system without the memory of ms.
The procedure abroad is completed in approximately 31 days.
There are some groups on facebook that may be of interest to you if you do want to start seriously researching this treatment…
Thank you everyone. Slightly nervous, but I’ve gotta fight it and I think if I don’t I will regret not trying. It’s such a big treatment, but there’s nothing else on offer to change the pathway now. I don’t think the DMDs made any difference really if I’m honest and suspect maybe had I been given then at a diagnosis, they may have but at nearly ten years on, I may have already started transitioning into SPMS from RR but had never met criteria for DMD treatment prior to this xxx
so I have no idea what is going on, but I am very symptomatic.