@QuantumMechanic

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QuantumMechanic

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.

TracyD

@TracyD

@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

QuantumMechanic

@QuantumMechanic

@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!

fendercali

@fendercali

Hi @quantemmechanic I'm new here as well but so far seem to be a nice lot. Sorry to see the NHS have been useless I've been lucky that my neurologist and nurses are always a phone call away and make the effort to squeeze me in to their appointment schedule sometimes the next day. Wasn't given an option of treatment at diagnosis but my 2nd attack 2 years later prompted them to put me on Avonex which seemed to keep further ones at bay but the side effects of flu like symptoms would knock me out for 2-3 days a week. It was a once a week self injection so dunno if that means it was a high concentration. About 5 years later I moved to Extavia which was self injection every other day and never noticed any side effects so was a nice release. An attack 2 years ago made them give me an MRI showing a lot of activity so they moved me to Gilenya. One pill once a day makes it so much more enjoyable than the needles I was so used to. Still on Gilenya now and no attacks so far just dealing with nerve pain control at the moment so fingers crossed. The panorama show annoyed me a little to be honest. I'll be interested in seeing and hearing from those on the show in 5-10 years time and see if it is the "one-off" treatment that was described by the show and 2 minutes later they said they didn't know if it was a cure. So potentially not a one off then. I hope the MS staff get it together soon for you but if not move up to Edinburgh cos these guys are great

QuantumMechanic

@QuantumMechanic

@fendercali Hey fendercali, (guitar fan? :) ) thanks for your info, an nice to meet you. yeah everyone seems nice on here. I was also wondering about what the outcome will be for those people on that show as well, I wasn't sure what to make of it. I like the idea of an immune system reboot as they put it. But I'd like them to find a way of making it a hell of a lot safer for the same result. What i'm interested in is finding out what the trigger for this is in the first place, I honestly had to pinch myself when the neurologist I saw told me that it had been researched for the last 100 years, an they still don't know. What? :/ *Everything* starts for a reason, they just have to track it down. I bet when they finally figure it out it'll be a headslap moment.

QuantumMechanic

@QuantumMechanic

@sandwich hi sandwich(great name btw), thanks for the welcome, I'm based in central Scotland, in Inverclyde. I'm a bit scared to read some of the information available to be honest, I think at the moment I just want to treat it as early and as aggressively as possible in the hope that in the future better treatments (if not just an outright cure) will become available.

fendercali

@fendercali

Yeah @quantummechanic good spot, got a Fender Strat California. Beautiful guitar but sadly don't get the strength to play it anymore as much as I'd like. The unknown around MS is mind boggling. How they have so little info on it is amazing. Thankfully we have it now rather than 30 years ago when they knew even less!

QuantumMechanic

@QuantumMechanic

@fendercali Nice one, I've always been surrounded by guitarists, but never actually able to play myself. I do have a guitar, but just a cheapo squier with a reverse head. You're absolutely right about the 30 years thing btw, it just infuriates me that it's taken this long for them to make concrete progress though. I wonder how much of that is due to advances in computer technology, ie mapping things out etc.

fendercali

@fendercali

Oh you should learn @quantummechanic nothing beats blaring out comfortably numb solo with Pink Floyd in the background! Hopefully since we've got so little out there about it there'll be a flood of discoveries and solid treatments that all come through at the same time!

potter

@potter

I have been on Tecfidera for 2 years the protocol on it has change since I started. They no longer just watch and wait if your white blood cell count drops they take you off of it. I also read that if you have J C Virus indicators they will discontinue the Tecfidera. Every drug therapy has it's problems, I was just talking to a friend who took Copaxon for years and just found out it has damaged her liver. Now she unable to take anything until her liver numbers get better. You just have to decide which one you think that is the best for you medically and that you can live with. Potter

cameron

@cameron

I'm feeling angry on your behalf. Not only have you been left to sort out treatment decisions, you've also - critically - been denied the counselling and general information process which you are entitled to, which would enable you to make that decision. A diagnosis of MS is a major blow and it sounds as if no-one around you has acknowledged this. You haven't been told what MS is about and how to manage it. There is a lot you should know, principally that it's not a death sentence and that thanks to treatment advances, it can be managed. But - and it's a big but - management is not all down to one doctor. You need your neurologist to be up to speed (yes, you'd think they'd all be, but the treatment options are getting more complex by the year and it would seem that not every neuro keeps up to date) . You are also entitled to see the specialist nurse and this is likely to be a key person in your ability to manage the MS. She should give you all manner of tips and practical advice. It's also very much down to you: once you're on treatment and being monitored, you'll get to know your own body better and start to watch out for triggers that can set off symptoms. Basically, the advice will be: live well. Good diet, plenty sleep, as much exercise as you can manage and avoid stress. None of it easy - even for non-MSers! So, cut yourself some slack here: the stress of what you're going through will be most unhelpful for the MS. Read up as much as you can and ask us here all the questions you have. We've been through it and come up the other side. Things will improve, I promise you. xxx

potter

@potter

I agree with Cameron you need to educate yourself and then keep on top of it. My friend with it liver problems from years of copaxon told me her neuro implies that because she's old that she shouldn't bother with treatments anymore. She is my age I am 63, I told her that was outrageous she is getting a new neuro now. You have to be your own advocate. Potter

RachaelG

@RachaelG

Hi @quantummechanic, I'm so so sorry, it is rubbish, isn't it? I was diagnosed with RRMS 13months ago, and was put on Copaxone as I was suffering with low mood and apparently the interferons are not great if you are in any way depressed. Haven't had a relapse since, although I have general fatigue and shortness of temper/reduced concentration - does anyone else find they can't multi-task anymore? I take 25 mcg Vitamin D3 daily as well. Copaxone seems to be the oldest drug, but I was assured it's not less effective than Plegridy/Avonex etc. @fendercali - I am moving to Edinburgh next month, in no small part to access better MS care! And becuase I has to change jobs because my employers had an "ostrich" mentality to dealing with me.

fendercali

@fendercali

@rachaelg The guys at the Anne Rowling Clinic in Edinburgh are fantastic. I cannot heap enough praise on them. I must drive them nuts with my phone calls and needing tests run but they always call me back within 24 hours and if they need me to come in they'll do their best to fit me in the next day. So you should be very well looked after here. Plus Edinburgh is an amazing city once you get used to the cold wind and rain lol David

RachaelG

@RachaelG

Thanks, @fendercali, that's great to know. I was at Uni in Edinburgh, so I'm familiar with the weather!

QuantumMechanic

@QuantumMechanic

Thanks everyone for the support and advice as well as information on your own experiences, I genuinely appreciate it. It's a huge help knowing that we can all be here for each other. @fendercali Comfortably Numb is probably one of my all time favourite Floyd tracks, simply amazing song! @cameron Thank you kindly. You're right, since this started and I was in hospital I was told that i'd need counselling and i'd be put in touch with one, this never materialised. Honestly so far i've had more counselling, support and advice from this community than anywhere else. I've had the distinct impression throughout my experience that they're are either really stretched, disorganised or both. Frankly I think there should be seperate organisations, charities maybe? That are able to monitor hospital admissions of MS patients and step in the moment one is admitted to help them feel less alone, confused and scared. Just my 2 cents. @potter This is good to know thank you. I think that's pretty outrageous too, that is one of my biggest fears about the whole thing, dealing with this when I'm older. A neurologist suggesting that a person should just stop doing the only thing suppressing their symptoms simply because they're older beggars belief. @rachaelg Thank you racheal, I've suffered from depression for years now, which made me even more cynical after this whole episode reared it's head. So any depression side effects I'd need to stay away from. I'm taking vitamin D3 as well, I jumped on that as soon as I could, I use an increased strength daily oral spray I picked up from Holland and Barret called DLux, it says it's 3000IU/75µg on the label, so I take 2 sprays of it each day. Not sure about all the values yet, I don't know what IU actually means, but it says each spray provides 1500% percent of the EC Nutrient Reference Value if that helps anyone else. Good luck with your move to Edinburgh btw, your current employer's behavior sounds shameful!

QuantumMechanic

@QuantumMechanic

@sandwich That is absolutely shocking! It really angers me so much! >:| How is this state of affairs still happening? It's absolutely appalling! I wish there was something organised we could collectively do to alleviate this happening to other people in the future!

Fi1909

@Fi1909

Like you I was recently diagnosed and in the process of finalising my choice of first DMT. I have found a combination of this group N.I.C.E and the MS Society to be the most informative and helped me to prepare for Neuro appointments . You definitely need a neurologist who has experience in MS. The MS trust tool is useful however I found all of them together helped me to decide on my request for treatment. NICE outlines how our condition should be manged and supported within the NHS . Always here for support

QuantumMechanic

@QuantumMechanic

@orlando27 @sandwich @fi1909 Thank goodness for this community. This is the kind of genuinely experienced advice people new to this condition desperately need. Sincere thank you to you all! Lemtrada is what I personally have settled on after weighing everything up. A reduction of 50% in relapse rate through tecfidera is not enough, and crucially at this stage before I've been given anything isn't going to halt irreparable nerve damage, which I have the the option of taking control over right now. The way I'm reasoning i'm thinking Lemtrada will slow this right down and help protect against the nerve damage and also thereby buying a lot more time whilst other similar treatments with less side effects than lemtrada are in the pipeline. In my mind Lemtrada's side effects are outweighed by the benefits and the potential damage that could be done by me not using it at this stage. The MS Nurses I spoke to have already sent me out a tecfidera information pack in advance of my meeting with them, so it looks as if they're gearing up for that. So it seems I'm going to have to put a case forward as to why I'd prefer this treatment. I hope I can do it properly, I've never had to do anything like that before so I'm hoping it will be straighforward. My strategy is to use Lemtrada until other potentially effective treatments are released such as maybe... https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ocrelizumab#avail I'm also bearing this in mind at all times at the moment... https://www.youtube.com/watch?v=kHPwvsrM27w

QuantumMechanic

@QuantumMechanic

@orlando27 Thank you kindly for sharing your experiences. It is humbling, and certainly very valuable information. I'm wondering, given your experience with previous DMTs and the trials, do you keep an eye on new treatments in development? I'm wondering what you think about ocrelizumab?