My MS Week

This Wednesday I went to see my Neuro. Generally these days this happens once a year, so I hadn't seen him (apart from passing in corridors) for a year. It was a warm sunny day, and I was almost late, lucky he was running late too. The heat and the extra sitting down meant when I was called I need help to get out of the chair and shuffle into his office. 

His first question 'How long have you been like this'. To be honest, I wasn't sure. To me it has been a slow decline. When he asked if I had been treated with steroids I told him as much; apart from my left hand suddenly joining my right hand in numbness and my on-off love/hate relationship with bladder and bowels the walking as been a slow descent into Ataxia hell. That and the numb/pain thing (oddly called anaesthesia dolorosa). 

His immediate (and predictable) reaction was to suggest Tysabri or Fingolymod. Old and tired conversations. I refuse to take these drugs until they have a little more history behind them and a better safety record.

His next concern was that my course of relapsing/remitting MS has moved to a course of secondary progressive MS. Despite the slow relapse free decline that wasn't a thought that had really crossed my mind. It is hard to tell if this is what has happened. First course of action, suspending the Avonex. I guess we find out if it was actually working or not. Next course of action, a course of one week (horrid blue) steroids. If nothing happens then I get a three week tapering course. If no improvement occurs this leads to the possibility that we have moved to secondary progressive. It's all a bit up in the air, it's all a bit 'we don't know'.

I sat in the corridor and waited for the buggy to go to the pharmacy. Wept a little weep and then looked up the Secondary Progressive course and found out that it might not be as bad as all that.

And an online friend gave me the following excellent words:

People with MS can live in fear of the word ‘progression’. Being told they have SPMS can be just as big a shock as the initial diagnosis of MS was.

They can feel they have a completely new disease, and it’s no longer treatable. It can feel like the end of the world for some.

But in reality, this is not the case. As a nurse, I reassure them that SPMS is just a name for one pattern of the disease – it doesn’t change the fact that their symptoms will still be treated and it doesn’t signal a sudden onset of disabling symptoms. They’ve still got the same disease, but perhaps very slowly changing.

Of course people need to know what type of MS they have, but we need to tell them in a way that’s not just clinical but takes account of their fears and concerns.

In the afternoon I had physio. This was better. We looked for a leg brace to help keep my left toe up so I stop tripping. I also am getting new crutches with easier to hold handles which will help me with my numb and painful hands.