Multiple sclerosis is a disease of questions.
What is happening to my body? Why is it happening? Why is it different for different people? When will I relapse? What will happen to me in the future? Have I done something to cause it? Why isn't there a cure? Can someone make me a cup of tea?
As a former journalist - and all round nosy person - I have asked these questions a lot.*
And my role as the communications volunteer with our local MS group now allows me to ask the questions on behalf of others too - and share the answers in our quarterly newsletter.
I try and interview someone medically knowledgeable each edition, and autumn was the turn of our neurologist.
Here's one of the Q&As from our conversation. It's very interesting and may (or may not) be reassuring:
Q: What interests and frustrates you most about MS as a condition?
A: There
are a large number of puzzling issues about MS which make
it a very unusual condition. These include:
* why does it
affect people in different ways - some people have a pretty 'benign' course, others have a terrible time
* some people recover extremely well from relapses, so why do others do badly?
* why
is it so unpredictable? I have seen some people in their 70s have a
relapse after 50 years of stability?
* why do men and women have a
different pattern of MS?
* how does pregnancy - at a fundamental level
- affect MS?
* when/at what stage is it appropriate to give the
most powerful disease modifying therapies?
* what is going on in "true"
progressive MS?
The frustrations are mainly to do with a lack of
resources (funding, facilities and people) to support people with MS,
a complicated and pretty unsupportive benefits system and the
complicated rules and protocols that have to be followed when
considering therapies for MS. The lack of approved treatments
for patients with advanced forms of MS is particularly difficult.
* especially the last one
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