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Hi Rebecca:)

So there was a study of progressives which showed that earlier interferon use "protected" them into the future. That of those who were in the drug arm of the study, when measured 5 years later, though progressive, did better and had less brain shrinkage.

http://archneur.ama-assn.org/cgi/conten ... 68/11/1421

What are we to make of it? I'm not sure. Certainly it would be a gold strike if their meds were shown to help with progressive disease (maybe the leading cause of people stopping thier meds), and the affiliations of the doctors raises eybrows:

Study authors reported serving as consultants or speakers for Serono, sanofi, Novartis, Teva, Biogen Idec, Bayer Schering, Almirall, Lilly, and Bracco, as well as receiving research support from several of these companies.

And as with any study, if we don't like the results, we can complain about the study size.

But it's still interesting. It should be easy enough to repeat if it's true and not just some sort of statistical fishing or a unique result.

Diagnosis: Jan 2010, OMS April 2010.
In RRMS, I have a feeling that any medications that reduce the rate of relapses reduce damage to nerves. If the immune system isn't attacking myelin then the nerves still have that protection. I imagine that repeated relapses may cause damage at a rate too fast for the body's repair mechanisms to handle, and sometimes damage to the nerve itself, so that alterations to the brain occur and a basic level of disability builds up and doesn't seem to go away in between relapses. This isn't always actually permanent, as every OMSer is well aware (ooh I wonder what an OMSer's brain would look like!) but I imagine that a lot of people with MS believe (or at least fear and suspect) that it is. Some of it probably is.

I don't know what proportion of disease progression is caused by relapses, but some of it surely is.

I wonder whether primary progressives are essentially having relapses with no remission in between? That happened to me for a few months, but v quickly; just relapse after relapse; if the rate was slower and the effects of each relapse more subtle maybe it would seem like slow and gradual progression?
Hi Catriona - I was diagnosed with MS one year ago. I had an attack, was given 5 days worth of steriods, which did nothing for me, waited another 6 or 8 weeks and had more steriods (3 days worth) - still no improvement. I decided not to take the drug option. Neuro hinted that I might have PPMS but said time will tell.

One year later - I still haven't recovered from that attack a year ago. I had my yearly MRI and neuro appointment last week - more lesions, which was a bummer because I have been on the diet for 8 months now (maybe not long enough to stop those lesions forming!). I have obviously had more attacks/relapses within this year, as I have more lesions to prove it - but I didn't know I was having attacks and I certainly haven't had any remissions in between - still haven't had a remission from last year!

So to answer your question (if I am indeed a PPMSer, which the neuro hinted I am, but at the same time, said he wouldn't label it), I am essentially having relapses with no remissions in between - its a slow gradual progression that I haven't noticed, but the neuro noticed it and my MRI proved it.

Neuro is going to try me on gilenya - I am terrified, because I don't even take panadol! With all the horrible side effects and risks, I feel that I am doomed if I take it and I am doomed if I don't.

Not sure if this is really constructively commenting on Alex's post or your post though


Not sure if this
Oh, poor Christine, you must be terrified :-(
Sometimes lesions are in bits of the brain where they don't cause obvious symptoms, so that might be why you haven't noticed relapses?
Good on your neuro for not wanting to label it - I reckon the different "types" of MS are just the human need to put things into categories, and the reality is a broad spectrum rather than 4 distinct "types".
In my case, I got rapidly worse and worse for about 7 months. I thought it must be progressive. It was only when I spoke with my MS nurse that she suggested it could be a series of relapses with no remissions - I don't know if we'd have worked this out if my sympyoms hadn't been obvious (poor balance, slurred speech, very poor sensation and coordination in fingers, no proprioception in limbs [I had no sense of where an arm or leg was unless I looked at it], etc). The 1st course of steroids didn't help, but luckily after the 2nd I stopped getting worse (didn't get any better for several months though).
I ended up going on Tysabri, v scary but not as scary at the time as the rapid downward slide I'd been on.
I looked at Gilenya (thinking of switching to it from Tysabri cos of the uber-scary Tysabri PML side effect); not an option as the NHS don't fund it, but it seems effective. Side effects lists are always scary (take a look at the side effects for paracetamol or a standard antibiotic) but only you can decide whether you think it's a risk worth taking.
Whatever you decide, I hope you have the best of luck with it. The diet can take some time to have a noticeable effect - about 5 months in my case, but that was with help from the steroids stopping the spate of relapses - hang in there.

I am also glad that your doctors didn't label you, and like Catriona said I don't think that we can always clearly put people in one of four groups. Scientists just do this to create order out of disorder. So, don't rush to thinking you are one thing when really you are a unique individual. I am sure you must be struggling with all of this and I know it is hard to wrap your brain around such a devastating feeling. Just because you have more lesions does not mean your body is not recovering. You may be having "silent" lesions and your body might be repairing the myelin without you even knowing it. Despite the fact that most of our immune systems are a little wacky the body can do amazing things and heal. Perhaps, you may have an experience like Catriona if you decide to take Gilenya. All of our bodies respond to different things and hopefully yours will react well to this one. It is such a complex disease that can steal hope on so many different levels. Thankfully we all found George who continues to guide us in the right direction mentally and physically. Keep up with the diet and give us a shout out with any news. I will be thinking of you!

Many of us take medication. You have to weigh the pros and cons, especially if your disease is active. The diet can take up to 2 years to get the full effect. Even the professor was on copaxone during that time.

Diagnosis: Jan 2010, OMS April 2010.
Thanks everyone - you have made me feel better. Thanks Alex for also reminding me that it could take 2 years for the diet to work its wonders. The drugs might just give me that extra boost I need (I am slowly getting my head around those drugs!).

Thanks again.

All the best
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