Since that lovely morning in the summer of 2005, when I first woke up with pins and needles in my right hand and wondered if I'd slept on it funny or something, I've been desperately frustrated that there seemed to be nothing that medical science could do for me but wait and watch and see what happened. Well, to be strictly accurate, it wasn't that they couldn't do anything for me, it was more that they had drawn some arbitrary looking diagnostic lines in the sand, and until I crossed one of those arbitrary lines, they weren't going to do anything for me. Not that medical science has a whole lot to offer in this area, but what they did have, they weren't sharing with me. They were most definitely bogarting the joint.
Now, of course, things are different. I've crossed those imaginary diagnostic lines and suddenly my world has changed. I've been diagnosed with a currently incurable neurological condition: this is not a good thing, but it does mean that the medicine box has been opened and my neurologist has suggested that I should attend a disease modifying clinic with a view to starting treatment.
This sounds like it ought to be a no-brainer: drugs are being offered, so why wouldn't I take them? They're really, really expensive drugs too, with a year's course coming in at something approaching £10,000 (thank you NHS!)...... And yet I've found that the decision to take disease modifying drugs is not something that can be taken lightly.
No treatment is still a viable option. There is no cure for multiple sclerosis, and the treatments on offer are thought to -- maybe -- slow down the progression of the disease by reducing the number of relapses and also by -- possibly -- reducing the progression of disability. Although there is some decent clinical evidence to suggest that these drugs will slow down the march of MS by some 30-50%, there is pretty much no way of proving that they're working.
And they all have side effects.
All of the four treatments on the table are (self-)administered by injection. One is a weekly injection into the thigh, and the other three are either daily or alternate day subcutaneous injections. Some require refrigeration, others do not. Three of the drugs are variants of a chemical called Beta Interferon, and the other is something called Glatiramer Acetate. One of the side-effects of Beta Interferon is that it causes flu-like symptoms like headaches, muscle-ache, fever and chills. One of the side-effects of the Glatiramer Acetate is that it can cause chest pain, palpitations, flushes, anxiety.... lovely. The weekly injection has the obvious disadvantage of a much bigger needle, but the more frequent injections (with smaller needles) can often cause injection site issues like swelling, redness, skin hardening and something alarming sounding called liponecrosis.
Sound great, right? It goes without saying that starting on a treatment like this is bound to have a huge impact on my lifestyle. As well as the injections themselves, I'm going to have to contend with taking the whole kit and caboodle pretty much everywhere I go, including though airport security (where, not surprisingly, they view 3-inch needles with a degree of suspicion....)
For all of that, though, I can't quite bring myself to see no treatment as an option. I could baulk at all those side-effects and decide to wait and see, but what am I supposed to think when the first big relapse comes along? Will I be wondering if it would have happened if I had been injecting myself? Perhaps it would have done, but would the impact be as severe? Maybe, but I don't think I want to roll the dice and take that chance.
But what to take? I had my first appointment with an MS Nurse yesterday. Now that I've been diagnosed, she's going to be the centre of my treatment hub, and yesterday she showed me all of the drugs and how they're taken, but the decision very much lies with me. I've been given a whole lot of supporting information, not least this fantastic website, but it's very clear that I'm the only person who can decide what to do.
I've got until next Friday, when I attend the clinic, to make up my mind.... and I really haven't got a clue. I can't really tell the difference between the drugs on clinical grounds (and the results of the trials are much of a muchness), so the only thing I can really do is to try to work out which one would suit my lifestyle the best (by affecting it the least). The intra-muscular injection might require a longer needle, but I'm not really squeamish about that, and to my mind there are huge advantages to only having to inject once per week, and to having a product that does not need to be kept in the fridge. That's my favourite at the moment, but it's not really much of a choice, is it? Still, if there's one thing I have decided, it's that doing something about this is a whole lot better than doing nothing.
Bring it on!
The end of reddit
5 days ago
Possibly your best post title ever. After a while it'll all be so routine you'll hardly think about it. But then find yourself weeping uncontrollably for a couple of minutes every other year or so. That's how I seem to be dealing with a similar predicament anyway.ReplyDelete
As with all of your posts on this subject, I feel utterly ill-equipped to offer any form of useful comment... so this is just to let you know that a) I'm reading, b) it sucks and c) I admire your attitude.ReplyDelete
ST, I i just want to offer my thoughts and sincerest best wishes to you. Good Luck to you and C.ReplyDelete
If it counts for anything I know two people with MS and both of them live normal lives. One of them takes the injections on one of them doesn't. The one that doesn't works in a restaurant. She's a tough girl. I know that isn't very usefu, Swiss, but I do hope that whatever you decide to do you remember that whether you call it the WT's or Ms or whatever that you're still the same person. Your routine might change (like Artog said) but you don't.
We all still love you the same.
If I can do anything....
Ahhh...the joy of making medical decisions. Nothing like it.ReplyDelete
I agree with Artog...I'm finding myself having a similar experience with not being able to eat gluten anymore. I go along quite well, then am confronted with freshly baked bread and I just want to weep.