Explaining your MS to a Neurologist

Trying to explain things to your neurologist when you have MS can be very challenging.?

It’s a bit like everything in your house is on fire and you’re standing there when the Fire Brigade eventually turns up. They ask you to describe the fire to them so they can help put it out.

You can’t just say, ‘well, you see, everything is on fire. I’m not a fire expert and I was hoping you’d guide me through what I need to do’.?

Instead, you try and break it down a bit and say things like ‘well, see the curtain over there, that’s on fire at the moment but it’s not always on fire, but it’s looking the most serious blaze at the moment, and I think it may seem smaller but the fire in the photo albums is likely doing the most damage. Then again, I’m not sure if I should be worried because the fire in the kitchen is also causing me concern as there are chemicals under the sink. By the way, the television seems to shoot flames out of the back from time to time but anytime I look directly at it they seem to stop until I look away again.’ And so on.?

You realise you are rabbiting on whilst the house is definitely burning down around you. The Fireman/woman seems used to this and patiently suggests that in their experience the television fire is nothing to worry about as it is often linked to a faulty DVD player. You remember you own a DVD player but it isn’t even plugged in anymore yet the Fireman/woman seems fixated on the DVD as the cause of the fire. You remember that it used to go on fire from time to time but it is no longer such a pressing issue as the curtains, the photo album, the kitchen and anywhere else you haven’t even noticed yet.?

The Fireman/woman pats you on the head, you end up feeling a bit daft as obviously the Fireman/woman is the expert and they say that you mustn’t worry too much as fires just happen sometimes.

They spray a bit of water on the curtain which seems to take the edge off those flames and say they need to leave as there are reports that another person’s house is on fire. Then the Fireman/woman’s assistant says they’ll swing by your house in a year to check on what is left. In addition they'll sometimes offer a helicopter to fly overhead with a thermal camera. What you don’t know is that the thermal camera in the helicopter can only pick up hot spots of fire in the roof and not the top floor.

PS: there are occasional Fireman/woman who take one look at the fire and say to you that in their experience it is best to just fully douse the entire house from top to bottom, as although it means absolutely everything is drenched it is also the best way of putting out all fires now and ensuring that the chance of any fire restarting in the future is minimised. To ensure their approach to firefighting is monitored properly they suggest a regular scan of the roof AND the top floor with their thermal camera so they can get on top of any possible future outbreak as soon as it starts and not just when the whole house is on fire again.?

PPS: On the other hand, some of the Fireman/woman seem to be very casual, telling you that you ought to choose how they attack the fire as it is your house. No one tells you that the results of your choice may not be what you expect in the long term. Although you are tackling a house blaze, with many hidden pockets of burning you aren’t even aware of, with a tiny water-only fire extinguisher as you, quite rightly, don’t want to soak the entire house. The expert Fireman/woman seems to know what they are talking about. They have uniforms and everything.?

PPPS: No one tells you that the structure of the house, once burnt past a point, can never be rebuilt and you’ll never be able to use the house you once had as several parts are now closed as they are beyond repair.?