I can only reiterate what Robin says about being proactive about treatment. I was dx in May 2004 with RR aged 39. Not having a clue about this disease I spent too long on the internet finding out about this disease and treatments. I knew nothing about MS and was shocked to learn that the aim of the treatment was to slow down disease progression not stop it or reverse it. I came across the following article on the UK MS Society website about Campath:
We have treated a small group of people with aggressive relapsing-remitting multiple sclerosis using an experimental drug called Campath-1H. This drug deliberately damages the immune system and is good at stopping further relapses. A large clinical trial is currently comparing the effectiveness and side-effects of Campath-1H and interferon-beta.
We imagined that Campath-1H treatment of multiple sclerosis would prevent further deterioration but would do nothing for damage already acquired. Quite unexpectedly however, most patients treated using a single dose of Campath-1H show a steady improvement in their disability over the next 12-24 months. This was encouraging but difficult to understand. The brain was being encouraged to repair itself; but why?
This project tests one possible explanation: that cells of the immune system are altered after Campath-1H treatment and they travel to the brain to release factors that encourage repair of nerve fibres. This touches on a fundamental question in multiple sclerosis research: does the process of inflammation, which is generally regarded as damaging, also actually encourage survival of nerve fibres?
Our approach is to look at the immune cells in the blood of people before and after Campath-1H. We put them in cultures in the laboratory and see if they release substances known to promote brain repair. So far we have had mixed results from these experiments. Secondly we take the soup released by these immune cells and pour it onto nerve cells growing in culture and watch what happens. Interestingly, after Campath-1H the immune cells do seem to encourage nerve cells to grow. Now we have to find out how!
This was the first time I had seen any reference to treatments leading to stability and improvement in disability. The research is being overseen by doctors / academics at Cambridge University where Campath was created.
I wrote to Dr Coles expressing an interest in the trials and met him in June 2005. He considered me too mild at the time (but thinking back, he had probably heard of the death on the trial). A couple more attacks earlier this year have left some deficits so I wrote to Dr Coles again and saw him in August. I should get my first infusion at the end of November. I have also been fortunate to correspond and meet with Robin.
Campath does have risks and Dr Coles ran through these with me and how they would seek to mitigate them. It's a very personal decision where individuals wil have to weigh up the potential risks and benefits. For me, the key factor was that I was not prepared to see myself progress i.e. each year getting abit worse. Three years ago I was running 1-2 a week. Now I walk but much slower than 'normal' people. Another big issue is that I have young children (6 and 4). It kills me every day to say 'daddy can't do this and daddy can't do that'.
Campath isn't a cure, but at the right time in the disease can prevent further damage and, for some, lead to improvements. For me it also buys some time. There has been an explosion of treatments in trial since I was dx. In the next few years there might be some bigger breakthroughs -treatments to protect axons from degenerating (which really ramps up in the SP stage) and treatments to promote re-myelination. Campath won't be my last treatment, but I hope it will keep my CNS in reasonable shape before something better is available.
So like Robin, I'm not promoting it - it may do nothing for me - but it was the one that caught my eye when I was researching treatment options. When you next see your neuro, perhaps tell her what you really want from treatment and go armed with some information of trails you might be interested in. The least she can do is support you with a letter (if that's the way you want to go). All of us are different in how we react and respond to this disease - there's no right or wrong. Some choose to take no medication, others the licenced treatments and others seek to get on treatment trials. Whatever you decide to do - best of luck.
PS I just saw that you had posted to say that you were SP. My other neuro thinks that Rituxan is very promising (being trialled for SP and PP). There are a few more trials on Dignan's list for SP.