Tag Archives: MS multiple sclerosis

May 01 2019
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Daily Life

Nothing About Us, Without Us?

The news came through a few weeks ago that the medicine I chose to tame my multiple sclerosis (MS) had been restricted by the European Medicine Agency.

Obviously, having had three courses of Lemtrada, I was concerned.

I read further.

22,000 of us have had the treatment. 39 strokes have been reported, often within hours of treatment. There are many other statistics I can’t make head nor tale of, as they are written up in medical lingo. In my experience, I had a horrendous flood of weakness after the first administration, then nothing. Just the usual tedium of being hooked up to a bag on a stick for several hours.

I was contacted by various people, worried that I hadn’t heard the news and I would drop dead fairly soon.

I didn’t die, but discovered that the overall risk of stroke after (Lemtrada) may not be statistically greater than stroke in the untreated multiple sclerosis population.’ When I decided to take Lemtrada, I knew the risk of Grave’s disease – which I had – leaving endocrinologists flummoxed as Lemtrada-induced Grave’s was a whole new ‘illness’.

So, I packed on weight. Gah. But, in the grand scheme of things, I would rather be fat (which I am) and happy than skinny and immobile.  I took the risk and it didn’t work out. It happens.

The temporary guidance advises that Lemtrada is only used on new patients after they have previously tried two other Disease Modifying Therapies. That just doesn’t happen with Lemtrada – it is a first line defence, for those of us who experience  a rapidly-cycling form of the illness. By the time a newly-diagnosed person has gone through two other treatments, they are no doubt not eligible for Lemtrada.

Within this whole confusing scenario, I wish the EMA had reached out and asked some us how Lemtrada had worked. But apparently their guidelines have not mentioned patient input.

So 22,000 of us have no voice.

This is completely unacceptable. Any form of medical restriction must involve the patients who have already taken the drug? Surely this is the first and foremost consideration?

It’s an oft-used phrase, ‘Nothing About Us, Without Us’,but when it comes to halting MS, we should be consulted.

Why wouldn’t we be?

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Oct 02 2017
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Symptoms and Treatment

Isten Hozott Magyarországon

danubeI think the title means, ‘Welcome to Hungary’?

I can’t be sure, as Hungarian is the one language that has completely flummoxed me.

Yet ‘welcome’ is the best word I can use to describe my trip to Hungary over the weekend, to speak at a neurological conference about my MS treatment option.

From the chaos of Budapest airport to the stunning hillside of a remote hotel on the curve of the Danube, I slept well for two nights in a row for the first time in months.

I had my speech ready, I had a nap beforehand, I polished my shoes. I had been told it would be a small conference attendance as I was due to speak at the end of the main day. Excellent. 60-odd people? I could handle that.

I met a translator, who had worked for NATO Generals, no less, so I felt a little feeble, clutching my print-out, scribbled-out speech in my hand. Luckily, he had also translated for my fellow-Glaswegian Alex Ferguson, so I knew I was on solid ground. Apparently, according to Hungarian people, I speak really, really fast.

Sadly for me, and my first attempt at a sole speech, it was a packed house, and we were running late. So I sat through three incredibly interesting presentations in Hungarian. Then it was my turn and nobody left the room. Everyone took up their headphones for an instant translation of my ramblings. Right. Ok. I could do this.

And so I began.

I gave my speech. People nodded and clapped. Then I moved from the lectern to the stage and sat with a fabulous Hungarian neurologist and answered questions. I felt a lot happier on this ground and chatted away, feeling sorry for the translator who had to explain  my ‘uumms’ and ‘ahhs’.

People clapped, and I left, a little shaky, but certain that I had done the best I could have. I was instantly whisked away to speak to a journalist from the only magazine for MS peeps, translator at hand. I had my photo taken and could feel his disappointment as I know I look a lot bigger in white tops.

Anyway. Hungary. What a beautiful country. I lived for a while not so very far from there – in Austria, for almost two years. But that was over 25 years ago.

To be back there was just perfect. The changes have been immense, and it was a joy to see a country I love blossom.

On an MS note, it was fantastic to speak to the movers and shakers in the Hungarian MS community, and hopefully, this will trickle down. And then some …

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