Hi Everyone,
There was a guy on here a year ago that went to Russia for stem cells last June.
From memory his name was Steve. I have looked back but a lot of posts have been deleted with the new version of the website.
I would really love to know how he got on.
Moyna xxx
I think this is his blog, although not read it for a while. He seems a very decent bloke and hope he is getting good results.
I messaged him and yes, he’s doing good from the brief message he sent me Back at the gym etc.
Sonia x
l read through the ‘blog’ - last night. What a guy!!! Has anyone else done the same. l would like to know the outcome further down the line. There must be a website of all the pwms who have had this HSCT. The Russian neuro/hospital came across as very efficient and caring.
The bottom line is - is there any improvement and how much. And of course how much did it cost.
And if it is successful - why have we not been offered the treatment.
l also left Steve a message - hoping to find out how he is now. And to find out how little Millie - his godchild who at 2yrs old was -having similar treatment for leukemia.
I think with HSCT there’s still the issue that there have been fatalities, the chemo knocks the immune system right out! But yes, it’s amazing and so good to hear
The HSCT facebook page has a vast number of blogs available in their files. It is a closed group, so you will need to join if you wish to read them.
I should add that Russia is the cheapest option by far at USD40,000, but it has a three year waiting list.
This thread might answer a few questions.
There are lots that has had it done,and there are clinics all over world that do it, theres even been a trial in Sheffield,
a lady named Stella had it done, a few year ago but very nearly died in the process,she did a blog on the msrc site, dont know how she is now though,Squiffy from msrc came on here to tell us about her a few times,
i joined the HSCT forum and read up all about it,very interesting stuff,but i do think the people on the forum play down just how dangerous it is,last time i was on the site,they were all argueing a lot, a lot of strong opinions,too, i
put a post on the forum saying i would like to try it but was scared of the mortality rate,and was just made to feel silly to even think about it, i think a lot of neuroligists here dont like the sound of it,either.
i do think its the nearest thing to a ‘cure’ though,and i admire the people who will take the risk,i decided i just couldnt.
Yes, l followed Stella’s HSCTreatment. The poor woman caught one of those horrendous hospital bugs and ended up losing fingers and toes. She also went deaf. This is why it is so important to make sure the hospital you choose, for this, follow all the
procedures to the letter. This is why the patient spends quite a long time in ‘lsolation wards’ - reading Steve’s blog - he emphasises all the time about the incredible care they take to make sure he is safe. Also, Dr Frederenko - Russia - uses different chemotherapy.
The lady who died-when Steve was in Russian hospital - did not have MS - and was in a very bad way prior to her HSCT- it was her last chance of a cure. Poor soul.
I don’t know how right he is but a few years ago when I asked his opinion my neurolagist said he believed that if it was ever to get a license in this country we would all be eligible because in monetary terms it would cost the NHS far less than our medication. Nina
It seems that stem cell transplantation doesn’t necessarily stop progressive disease, only relapsing remitting attacks:
Hi lapwing
there are number of studies on it suggesting different results
one says 25% chance of stopping disease and in those cases it was 10years or more of stopping which I would take!
the other one was 75% chance of stopping! Which is huge! I think if it could stop for ten years there may be more neuroprotective drugs etc by then
i think they all agree it’s better in relapsing or progressive where active lesions are present
also better in lower edss levels and people who have had the disease for less period of time and younger age!
i guess you never know, it’s individual whther to have it or not but I have spoken on Internet to people who have had it and some claim it’s stopped sisease but it’s been a hard road and some say no difference