Treatment Choice - Advice & slight rant.
Hi all, this is my first post. First let me say that my heart goes out to all of you, I was recently diagnosed with RRMS at the age of 39, just in time for my 40th birthday, and it's been extremely difficult for me to take. I began developing double vision back in June last year and it's progressed every day since then. I feel very lost, I know no one else nearby in my position and the NHS's apparent attitude toward the situation has been quite shocking to me, it almost seems lackadaisical.
After a long wait I finally got to see a neurologist last week and after giving me a diagnosis he advised me to visit this website...
https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions
and to use the interactive tool to decide which drug to take. He recommended tecfidera, but after using the comparison tool the idea of possible brain infection does not appeal to me.
Could I ask for some feedback from others with more knowledge on their experiences and advice on what they feel would be a good option.
I feel very much in no mans land at the moment and extremely low, up till now I've always been the type to nip problems in the bud the instant they arise as I think this is of the utmost importance to stop them growing. Especially after reading this page...
https://www.mstrust.org.uk/a-z/neda-no-evidence-disease-activity
I am at a loss to understand why there aren't systems in place to accelerate treatments for this given the nature of it, the bureaucracy is quite literally dangerous. Again my heart goes out to everyone who finds themselves here.
Also, I'm interested to know people's thoughts on the recent Panorama programme on MS, as it seems to have been the most positive thing I've seen so far. However, I was rather taken back when I asked the neurologist I saw about it and he said "That treatment's actually been around for a while, we tend not to advise it because some patients don't survive the chemo". Which isn't really the way the programme framed it. Now I don't know what to think.
Frankly I'm amazed it's the 21st century and this still hasn't been solved yet, it's embarrassing.
@quantummechanic Welcome to Shift, sorry that your diagnosis led you to being here :-( We're a friendly supportive bunch here and mostly house trained :-) The slow nature of diagnosis and the path to treatment is something we're pretty much all sadly familiar with. HSCT the treatment on the panorama program is the 'neutron bomb' of treatments. It's something my Neurologist and I discuss occasionally as the 'If your current treatment stops working' option. My current treatment is Lemtrada, and if you're up for the not just nip it in the bud variety of fighting back do some research into it - rather than Chemotherapy it's a Monoclonal Antibody that specifically targets the CD bearing T & B cells (those nasty little buggers that are using your Central Nervous System as a snack bar) and explodes them - wipes the little sod out. It does mean you have a somewhat lowered immune system, but it's significantly less aggressive than HSCT on your body as a whole and has VERY high success rates in stopping relapses for VERY long periods of time - there are a large number people who participated in the original trials 10+ years ago who've never needed to be retreated they're still living relapse free. (sometimes I wonder why Panorama would do a program on this and not on Lemtrada which has such great results - I can only assume it's because we don't lose our hair on Lemtrada so it's not quite so shocking for the audience) Lemtrada is a treatment that works best if it's something you can get soon after diagnosis - the less time MS has to mess with you the less damage is done. My blog is posted on here and details before during and after - http://tracyslemtradajourney.blogspot.co.uk/ I'm UK based in Berkshire, and I'm more than happy to talk to you about it and the things that you should bear in mind for a treatment like this. If you want to talk then please feel free to drop me a PM, I'm happy to share contact details xxx
@tracyd Thanks so much for the reply! :) It's good to feel just that little bit less alone with this, Lemtrada is what I had been thinking about after weighing everything up so it's good to hear positives from someone more experienced. Now I just have to contact the MS Nurses to try and set it up as soon as possible so as not to waste time, I'm also still inexperienced with the procedures in how to actually arrange the treatments!