Blowin' in the wind

I'm back in hospital tomorrow, having my next round of tests to see I can take my second course of Cladribine.

Almost unbelievable that a year has passed since that first appointment.

But time does indeed fly.

My lymphocytes need to have recovered enough to allow me to do this, to at least 0.8, I think, but I will get the details tomorrow as prescribing parameters may have changed over the past 12 months.

My last bloods in June put me at 0.73, so, assuming the 0.8 is still correct, we shall see if my poor body has managed to do what it needs to do to get over the line.

But even then, it's only the first hurdle in the wonderful world of MS drugs.

Can I take them is not the question. Really, the question is will they work?

And the answer to that is currently wafting on the breeze.

:: Blowin' in the wind by Bob Dylan

What's going on?

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.

:: What's going on? by Marvin Gaye

* especially the last one