Your doc is absolutely correct about the lack of correlation between lesions and symptom/ disease progression. That is why MRIs, while important, are not solely used to diagnose MS.
One can have many lesions and few if any symptoms or only a couple of lesions and severe symptoms.
As some people on this forum have stated, what use is it if you have an MRI that shows very little but are terribly disabled by your symptoms.
JFH wrote:Thanks for the opinions chaps (? Felly not sure of your gender).
I'm a little suspicious of the Nx in our locality - I believe also his research area is nvCJD so MS is a sideline - claimed not to have heard of Prof Swank!
You would be suprised how many neurologists have not heard of swank or any other treatment that doesn't fall into the orthodox categories. Not being an MS specialist makes it even more likely they will not have this knowledge.
I guess when I say I want to know what the clinical procedures will be it is me trying to take control a little bit more. I dont mind partnerships and indeed need them right now but I want to be more than the patient!
There is nothing wrong in wanting to know what the procedures will be, its a good idea to find out as much as possible. I suggest you have a look at the guidelines on the UK MS society site, which have 'supposedly' been issued to all GPs in the local health authority area, as well as neurologists
http://www.mssociety.org.uk/docs/NICE_A ... line_8.pdf
These are the clinical treatment guidelines and will give you an extremely good idea of what procedures should be in place. For example have you been appointed an MS nurse, have you been offered counselling?
Felly, you're the third person in ten days to give me the same tip: Concentrate, if you can on the here and now - not what might happen I'm sure you're all right. But for me at 50 quite used to managing life and its consequences, just 8 weeks into a dx and still able-bodied I want to do as much as I can for me while I can*, part of that is taking control and part of taking control for me is planning.
Contingency plans are important and so is feeling some control but there are some things in life you do not have control over and often the hardest thing is admitting to this, working out what you can control and concentrating on these things. Believe it or not this can be quite liberating and can take a lot of pressure and guilt away.
* Unblocked the main drain from our house yesterday - the benefits of being a householder are sometimes exagerated!
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