This Is MS Multiple Sclerosis Knowledge & Support Community

It's interesting that one of the authors of this report is Claudia Lucchinetti. Perhaps she has changed her opinion on the heterogenous nature of MS. Also it appears to contradict the findings of Prineas and Barnett. Are we swinging back towards inflammation being the primary mechanism of MS rather than axonal degeneration?

Robin

Robin,

Good to hear from you. Hope you are still doing well.

As a recipient of Campath 1-H, you might be interested in the research article by Dr Coles and co (although I couldn't open the link to the summary). See below.

http://www.msif.org/en/research/researc ... homeo.html


Unfortunately, I'm coming to the conclusion that the experts haven't got a clue about this disease. Recent research has shown that grey matter damage is involved from the earliest stage - so it's not just a disease of myelin (white matter). Some other recent research has also suggested that it is a global disease of the CNS rather than just related to lesions in the white matter! It just seems to get worse the more they find out.

I posted a presentation (video) from Dr Gavin Giovannoni last week. He is a leading expert but couldn't answer the question as to whether the disease is primarily neuro-degenerative with inflammation playing a secondary role, or whether inflammation is the start and neuro-degeneration takes place later.

The only treatments that seem to give MS sufferers any sort of benefit (in terms of regaining some lost functions) are Campath 1-H and Tovaxin (where reductions in EDSS scores have been seen by many). Of course this is only when the disease is still in the RR stage. I think you made a good choice given the limited options available.

Until the researchers can come up with a strategy to protect the axons / nerves, and repair / regenerate the damaged axons and nerves, we will be fighting a losing battle.

I'd be interested in any update on how you are doing. I'm worried that we have heard nothing from LabRat in the US!

All the best

Bromley

Hi Ian

I did read the Coles abstract but unfortunately without the whole text of the article it doesn't really say a lot to me. I also watched the Giovanni presentation (In fact I nicked your link and posted it on another site because it does give a very good picture of the relevant benefits if the DMDs ). It is however somewhat out of date, I think it was from 2003; and as you know the picture of MS appears to change every two minutes let alone 2 years!

I completely agree that MS affects the grey matter, howver the loss of neurons can be attributed to the death of the connected axon due to transection or a toxic environment. I myself am still on the side of the inflammatory cause, particularly involving the microglia (remember the grey matter thread? ;) )

On a personal note I'm still doing very well, not long ago I walked a dog for over a mile without undue problems. 7 months ago the bottom of my garden was a bridge too far! I've gone from 4 relapses a year to Zero and counting And my proudest achievement... I can stand on one leg without difficulty

Like you, I'm concerned about Rat. I really hope he was not the one unfortunate who died as a result of his treatment.

Whilst I don't post much anymore, I feel that I'm fundamentally biased these days; I do read your posts. Kudos for the amount of research that you do but please remember there is much more to life than MS. It's all too easy to let this disease dominate your life, I know, I've been there. If a cure comes then that's great, but while we wait there is so much life that we should be taking the time to enjoy. As the man said, carpe diem.

Hope you stay well.

Robin

Robin,

Glad to hear you are still doing fine.

You are dead right about there being more to life than MS.

I'm seeing a neurologist in late November to talk about starting on DMDs - (for those outside the UK) in the UK two attacks are required before you can start any DMDs and it can take six months to see a neurologist on the National Health System. I imagine that when (if) if I start them, I may feel a bit more in control. At the moment the only outlet I have is spending too much time viewing current research - which I hope some on the site have found useful.

I think the treatment pipeline shows that there is some real hope in the not too distant future, and I was glad to see that Campath 1-H looks like going to Phase III trials next year. This is an extreme disease and unfortunately, fairly extreme treatments are required to combat it. I would be slightly more confident if the researchers got to grips with what this disease was really about rather than keep observing and speculating.


Stay well

Ian