People with MS tend to be a bit isolated from the everyday swirl of the outside world. We do, due to fatigue and lack of mobility, spend a good proportion of our day on the Internet.
When someone gives you a diagnosis, it’s always a shock. People like me, curious and thirsty for knowledge, immediately go and find out as much as they can about this disease.
There are a few people who are diagnosed, who know what type of MS they have, but in general, a patient presenting himself or herself for diagnosis with double vision, or sudden numbness, had no idea what their prognosis will be.
I didn’t know, but my very nice neurologist thought that it would be Relapsing/Remitting Multiple Sclerosis. I’d had odd bouts of illness and had recovered some weeks later.
This was 2000. A very long time ago in the MS world and the online community was small and tended to be based in the US.
I was more isolated than most people – being quite possibly the only person in South East Asia with RRMS. Friends became acquaintances; other friends became as close as my family – a lifeline.
My best friend Keiko, actually cried when I recovered from my first long relapse and was able to play the piano again. We’d play piano duets, fuelled by gin & tonics and she was great and I was awful. I still am – there has been no deterioration in my musical motor skills, but to be honest, I was never known to play in public.
I can play Bach Two-part Inventions, some Preludes and Fugues, some Mozart Sonatas and these are only for me – or my long-suffering husband.
So, back to MS. Back in 2000, the UK had ‘Jooly’s Joint’ an email based support group and I made some great friends there.
An important topic for discussion was treatment. Relapsing/Remitting MS is a type of MS that does respond to drug therapy. However, at that time, the available options – Disease Modifying Drugs were rationed. Some people in got to try these drugs and lots didn’t.
There was a doctor in the UK, whose wife was diagnosed with RRMS and the local health authority refused to let her start on a DMD.
He ended up travelling to France to buy it, with his own money and he wasn’t happy.
Various commentators with and without MS, regarded these drugs as worthless and that they worked for only a few people.
But….what if I was one of those people?
Well, I was and I still am. I started Rebif (beta-interferon 1a) and I’m still injecting it 3 times per week even now. It’s still working, as I haven’t had a relapse – or attack since 2009.
That relapse was sudden and brutal and at that time, I wasn’t taking Rebif, as I’d moved to Galicia (northwest Spain) and thought that I didn’t need it anymore,after I used the last injection in 08 as I hadn’t had a relapse for years.
I was wrong and after a couple of weeks in the local hospital, my neurologist asked for funding for me to restart Rebif and he was successful.
I met the Rebif nurse last year and asked her if I was the patient who’d been on Rebif for the longest time and she shook her head. She had some patients who’d been on it since 1996. I was amazed – this must have been in the trial phases and yet, these people were still taking Rebif and still walking and living fairly normal lives.
So, why is this blog post bidding the UKMSS farewell, well unfortunately, the Everyday Living board has some posters on it, who are, well let’s just be kind and call them ‘conspiracy theorists’ and ‘DMD deniers’, ‘Fat Pharma haters’ and ‘Enthusiastic Low Dose Naltrexone Pushers’.
I take Low Dose Naltrexone myself, as it has really helped with my MS symptoms – especially my bladder function. I don’t think it’s more effective than Rebif at stopping relapses, as I had that awful relapse in 2009, whilst taking LDN alone.
I’d been warned that this might happen. The NHS neurologist, to whom I was assigned, on my return to the UK in 2002, was sceptical and warned me that there was no evidence that taking LDN alone would/could stop relapses. He was correct.
There is a poster on the Everyday Living board who doesn’t have MS. His wife has MS and has responded well to LDN.
He believes that it is his role now, to tell other people with MS, that LDN is better and more effective in RRMS than Avonex or Rebif, or Copaxone or Betaferon. He’s spent the last three years making wildly inaccurate claims for LDN, telling people with very aggressive MS to try LDN first and to go against their doctor, who in his view, is pushing a toxic drug that may kill (Tysabri).
He isn’t a doctor or a pharmacist or medically trained. He’s just an obsessive poster with no sympathy or empathy for others and I’ve been trying to counter his claims since 2009. It’s been a bit of a dogfight, which I think he enjoys. I don’t. I spend too much time thinking of logical responses and that isn’t healthy. Not for me.
He’s won – I’ve run out of energy and patience and so I have left the Everyday Living discussion board. I haven’t flounced away, I’ve just quietly left and now I’m going to try to get on with life.
I’ve wasted too many days of what’s left of my life, trying to argue and counter his claims. This is my life that’s being wasted and I have realised that life is more precious than constantly battling against a blinkered bigot, who won’t ever back down.
I’m done. I have MS and asthma and I’m just dog-tired and worn out.
The UK MSS website was a great community in its last inception, but it was re-launched last year and isn’t so easy to navigate now. That’s a shame – but in a way, it’s contributed towards my decision to stop living in the online MS world and to put my creative energies into activities that may bring in some much-needed income.
Farewell Everyday Living. I will miss you, but I won’t miss the evangelists. Strange, really how someone who doesn’t even have MS, can drive away those who are unlucky enough to live with MS. That’s life, I guess.