That was very helpful and informative as I had never understood the difference between dymyelination and inflammation and did not realise that the former could cause lesions without any symptoms.
So this means that we can be really oblivious to what is happening inside us...which is not such good news really.
Anyhow thanks Alex and also I just wondered how often it is considered safe to take steroids in a year. I know that this will depend on the number of relapses someone has..but my understanding was that one should only take a maximum of 3 courses within 12 months.
I can't answer that since PPMS is not treated with steroids. I have constant symptoms, no flairs, attacks etc. like with RRMS. I have never been and will never be offered steroids.
The thing to understand about steroids is they do not alter the course of MS they help with symptoms. You will recover but more slowly with out them. Sometimes with steroids you can have a rebound effect meaning your symptoms come back after the course.
In some cases the symptoms are so bad you need them.
But if you had ON, for example, and took steroids right away you can still have damage, they will not stop the damage. They help the inflammation not the demylating.
From my veterinary medicine experience I know that steroids are great when needed but if used a lot they are hard on the organs such as the liver. It has to be balanced out and if you are on them make sure the docs are doing blood work to monitor everything. Most Docs will keep track of this anyway.
I got my information from talks by MS Specialists and researchers I go to the MS Society puts on. In the US the MS Society has lots of pamphlets and books free of charge. I got a book for the Newly Diagnosed from them and one on PPMS.
Another book which is technical but good is Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis by Howard L. Weiner. It is by a researcher and goes through all they know or do not know about MS to date. It shows how complicated this illness is and why the research takes so long. I was given it by my MS Specialist to read when I was diagnosed.