This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Linda, All Rebif is supposed to do is to slow down the relapse rate. It doesn't make the MS better, but stops the lesions from forming -in my case. It doesn't work that way for everyone. I still have MS. I can't work a whole day, due to fatigue. LDN helped with my bladder. I can't bend my knees d...

Hi Linda, SOS Medika is in South Jakarta- it's quite expensive though, but the GPs are excellent. I lived in Cilandak, which was lovely. I do miss the food - gorengan (bad for MS but yummy and durian!). It's very lonely with MS in SE Asia. I was the only person as far as I could find, with MS and I'...

Hi Linda, I spent many years in Jakarta. Is Rebif licensed there now? It wasn't licensed when I was there and we had to buy it in Singapore and bring it back with us. There are excellent neurologists in Singapore and world-class hospitals. It's lonely though, as MS is very rare. Rebif was very expen...

Er, this isn't my opinion. It's the advice from the LDN Trust. I don't know what's right or not, but they counteracted the old advice at the conference in 09 and there's still a lots of arguments about how both drugs work. It seems impossible to know for sure which is correct, except that in the UK,...

Taking LDN and Rebif is a huge no-no! They contradict each other and youll get no benefits at all from LDN. I was on Rebif for 6 years and wound up having to stop it because I developed NABs (neutralizing antibodies) It bascially poisoned me. I have NOTHING against LDN. I feel wonderful- and truly ...

Hi, I had a huge relapse whilst on LDN. I was so cross about this that I just kept away from MS forums. I have noticed that other people who haven't had a great result from LDN just post once about it and then don't bother with the LDN forums again. I had been on Rebif for 8 years and it had worked ...

Hi there, here's one experience that may cheer you up even more. I've been on Rebif since October 2000. My neurologist reckons it's kept me in RRMS, but it could just be down to good luck. I was really ill at diagnosis and I've been up and down, physically over the years, but after a few months off ...

Hi again - it's so difficult at times. Gilenya looks good, but I'm sorry that I can't help with any advice as most of MS pals are in the UK and NICE have decided that it's not cost-effective (like most of the MS drugs) and so neuros and patients who were hoping for an oral drug, have been very disap...

Hi, I've been on Rebif since 2000. It's worked well, with no bad side-effects. In 08, I moved countries and assumed that after so long, that I must be SPMS and when the Rebif ran out, started LDN. A few months later I had a very bad relapse - the first since 05 and so as I am well, with very few amb...

Hi, I'm going to confuse the issue a bit, and for that I'm sorry. It's fine to take beta-interferon with LDN. The information about the two drugs not being compatible has changed since the conference in 09. If you go to the LDN Trust message board, there's a great explanation by Dr Gilhooly and Step...

Hi there, I was diagnosed in Asia and used to come back to the UK every year. I was/am on Rebif and it was paid for (in cash!) by my husband's employers. What I used to do, was buy 3 months supply and put it in my suitcase and hope for the best. It never failed - but Rebif was okay out of the fridge...

Why? If it works then why worry about a lawsuit? It's not a class action about a drug that doesnn't work - I live in Europe and I don't understand why the CSVI forum people think this is such a big deal. The reason why I write this, is because after some research, (Wikipedia) I realised that because...

Even better news. I spoke to my local farmacia, told them all about LDN and asked if I could buy a packet of Naltrexone and that it would last nearly a year and they were perfectly happy to sell me a packet. I'll pick it up on Monday and it will cost the grand sum of 23 euros. This has to be the che...

Hi, Well after the rather useless info here, I managed to read the Spanish foros on how to get LDN. There are NO compounding farmacias in mainland Spain. You have to get your hands on a packet of 50mg Naltrexone and do it at home, but this is what I've been doing for 2 years, so no problem. To obtai...

I could be wrong, and if I am, apologies. I'm not a troll. I really do want to restart LDN. I've asked at the LDN Trust and no one could help. I'm even personal (as in having met them) friends with one of their mods. I'm on the DVD with my testimony, having done an interview with the admirable Linda...