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highlander
3 months ago

@dominics
You can lead a horse to water but you can’t make it drink, so they say.🤔


vixen
3 months ago

What people need to understand and realise is that your ‘militancy’ has got us all discounted disability travel in the UK so bring in the MS Army, led by you @dominics 🙂


highlander
3 months ago

@vixen
Don’t discount your good self 👏
Power to the people 😀


johnjohnsjohns
3 months ago

@dominics

I don’t think what you suggest about early tx is in any way militant. I am familiar with exactly what happens when tx is delayed and, in the vast majority of cases, I believe you are preaching to the converted.


dominics
3 months ago

@johnjohnsjohns You be surprised at the amount of docs and nurses (and patients as an understandable follow-on) who opt for the softly softly approach.

I am flabbergasted sometimes at the, ‘Gee, best go in conservatively’ approach. That really ought to be the last option, not even presented as a first or second choice.


johnjohnsjohns
3 months ago

@dominics. I totally agree. The management of MS reminds me of where we once were with rheumatoid arthritis and other rheumatological conditions – escalation vs de-escalation therapy. Thankfully, they are finally flipping the treatment pyramid for MS. I guess we’ll just have to wait for it to filter through fully.


highlander
3 months ago

@dominics
It’s because thier scared and highly unknowledgeable about their chosen profession.
If the tables were turned I’m sure they wouldn’t be choosing a Ford model T over a brand new Ferrari …… would you?
Ahhh but wait people do, and better still don’t want to do anything.
That’s their choice….. far enough.
But I won’t criticise them for that or pressures them to do it
But helping people understand how this disease works and how it can be combatted and make it visible to all should be commended not criticised.
Just saying 🤐


doubleo7hud
3 months ago

Oh feck sake 😂 that’s me up the creek with a paddle made of fecking Yorkshire puddings. If I’d of known that 2 years ago I’d have pumped mesen full of that glowing green stuff straight away 😂 I chose to work for the sake of my children I thought I might of had a little grace and time to think on it but 6 months passed and my treatment options were reduced. If more people were straight to the point and told me there was a time limit I might of pulled my finger aht a bit swifter.


lynb
3 months ago

@dominics – haven’t added to this forum for a while but want to say that you have been a fantastic help to many of us MSers. I now have a disability rail card thanks to you posting on here. I am also seeking info re Ocvevus as my next DMT thanks to your input on this forum. I was on Tecfidera since 2016 but stopped in April on advice from my Neurologist due to very low lymphocytes. I’m now waiting for my next appointment to discuss (I hope I’m not classed as too old (60)…. Thanks again.


wobbleone
3 months ago

@dominics
I think you need to be a bit more militant where the docs & neurologists are concerned, then maybe people like me can get treatment. Hit it hard they say …. not eligible on current relapse frequency he (neurologist) says …… of course you are she (nurse) says ….. nope NHS England says ….
it would seem we’re waitung until perhaps diagnosis moves to SPMS but who knows how I’ll be then . The 10 +yrs of putting my relapses down as everything but should be taken into account.😬
🙃


rmdaniels
3 months ago

@dominics
Thank you for posting this! I just had my second relapse I think…after my initial diagnosis in Feb this year; new symptoms/numbness on left side of face & neck & chill bumps sensations up & down my “good” side. I think it might be the right time to talk to my neuro about a higher caliber gun…I’m on Tecfidera now. Any suggestions?


johnjohnsjohns
3 months ago

@rmdaniels
Just in case you haven’t seen this, take a look at the following link: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid. It’s a decision aid for choosing a DMD where you can compare and contrast them.

 

PS Weblink corrected – Admin (Stumbler)


dominics
3 months ago

@johnjohnsjohns It is an excellent tool. Quite conservative, as any relatively generic Web based site has to be. A friend is one of the inputs into it. As friendly as we are, we depart on the aggressiveness of approach.

My argument is that when you actually have MS it shades your outlook more than just talking about it academically.

It is hard for both sides: I don’t want it so will risk more than ‘normal’ to fight it, and they never want to risk much. Reducing risk, even remote ones, is bred into medics.

@rmdaniels – I will espouse a philosophy, mention what is available but would never be comfortable recommending a drug per se. There is Alemtuzumab (currently v restricted but in use by experts), Ocrelizumab that I and many more are taking these days, Cladribine and one or two more.

I’d turn the question to my neuro around and ask why the ‘best/strongest’ drugs are and when they reply, ask why they won’t prescribe them to you. Make them squirm and if they give you a version of, ‘you’re not ill enough’ move neuro. Immediately ask them who they’d recommend for a 2nd opinion, probably ignore it as you are merely telegraphing unhappiness, and ask your GP to refer you to the lead consultant at one of the specialist centres.

To the best of my knowledge they are Edinburgh, Sheffield, Cambridge, Guys London, Oxford and I think Bristol or Cardiff.

Time (and MS) waits for no one.

Personally: I have RRMS dx’d 1994. I am off to an HSCT open day in London next Sat. That is how seriously I take it. I’ll beg, borrow, steal, dip into my pension, whatever if I have to pay.


johnjohnsjohns
3 months ago

@ dominics Indeed, you have to re-conceptualise your understanding of risk with with MS and the therapeutic management strategies. I think that, to an extent, the recommendations made by neurologists do depend on the drugs they feel comfortable with and have experience of. However, the choice of drug should come down to the patient as part of the therapeutic partnership they have with the neurologist. After all, they are not the patient taking it.
I can fully understand why you are so earnest. Time is brain with MS, there’s only so much neural reserve and the ‘pool is leaking’ as we age. I really hope that you manage to access HSCT and it works for you – it’s the most efficacious and promising treatment there is right now and I would jump at it if I had the opportunity, just like you. Pardon my French, but MS is a very shitty deal.

@rmdaniels Don’t be afraid of advocating for yourself. The choice you make will ultimately be up to you. There are a lot of evidence-based and peer review resources out there to inform and empower you. Dominics has given you very sound advice!


dominics
3 months ago

@johnjohnsjohns – I am looking at HSCT. A friend just finished it at London Bridge. Long lunch the other day discussing the ins and outs. It is a big commit, on several fronts. Assuming they’ll have me at all.

Guidance to medics – I am sure you are aware – in the NHS is to put the patient at the centre and not as an adjunct who is the object of treatment but not the centre.

Some have embraced this, some – IMHO – have gone too far and many stories of apparent abrogation of leadership and responsibility (?) where the DMT decision burden with newly dx’d is dropped in lap of the patient. This sometimes leads to a sub-par approach as patient is naturally v concerned and defaults to a 30y old drug as risk isn’t explained nor understood.

It is an awfully tricky balance and still ined school the F1s of this world receive relatively little patient focused training.

I’ll get off my soapbox now. I have a County Council to harangue when they deign it is time to go to work!


cosine
3 months ago

@dominics
Why do some people say theres not enough good evidence for DMT and instead opt for lifestyle / dietary changes.

And why does the NICE guidelines say that vit D shouldn’t be given solely for MS but most people on here are on high dose vit D?


dominics
3 months ago

@cosine I recently wrote my MSc thesis on the reasons for behaviour (in an environmental behaviour context but the research runs across) and I suspect I could bore you and everyone else rigid.

Nonetheless, to really oversimplify, it is natural, especially when newly diagnosed to be quite discombobulated. You simply do not make as rational decisions. We look for answers, reasons, justifications and so on. See the five stages of grief as detailed in the Kubler-Ross model. They are just as applicable ( https://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model It is very tempting to imagine in conspiracies in general – look at the damage the vaccine debacle has caused to public health as it DOES NOT cause autism – as they satisfy an need for explication that we crave for. The long-held and highly developed belief in a deity (there are c. 2000 God’s in the world, go figure!) came from the human need for a simple explanation.

Anecdotally from an attendee, I was talking to some 3-4y ago at a large neurology conference in North America on MS a speaker asked for a show of hands in the room. Circa half the crowd were self-administering high dose Vit D. I can;’t recall the exact details now but there was a Toronto based study (I think, I cannot recall) that concluded that the effective dose of Vit D was 4300 or 4500 iU daily.

I take 10000 iU every other day as it keeps that kind of level in the body on a running basis. I get mine prescribed by my friendly and compliant GP in 4 monthly intervals as it guarantees a reliable standard of manufacturing and delivery when a drug is provided by the NHS. The over the counter ones of Vit D and other ‘meds’ have been tested and found wanting regarding reliable and accurate dosing.

The GP is permitted to Rx something on the NHS list, and it is there. If they claim ignorance then their computer system WILL pop up the option of: ’28 Cholecalciferol [Vit D3] 10000u tabs’ . I have had it filled with two different brands, the most common being SunVit-D3.


wobbleone
3 months ago

@dominics
I would also add that my husband asked the neurologist outright if in his opinion I should be on a DMD and he said yes.

… but ….I didnt meet the criteria of 2 (logged)relapses in 2 yrs. 🙄
( symptoms weren’t logged as I’d been told I’d had a stroke and any problems over further years I put down to that)

I keep trying to convince myself that I’m doing ok and at least avoiding the side effects …. I’m not very convincing 😅😔


dominics
3 months ago

@wobbleone – I have learned what they need to see – it is all online – and then ensured that I have presented appropriately. This method was taught to me by my neuro back in the day who wanted me to have Rebif when it was being trialled. She explained what had to be reported. I duly obliged and voila, we were out of the traps and drugs ever since.

MS is extremely transient and unpredictable and if the evoked potentials (all the poking and prodding) don’t support my claims then gosh-golly, I must be having a weird one-off day, I am lucky but this isn’t the way life is. The drug, please 🙂

He uuuummed and aaawed about the lack of MRI activity when I was up for Ocrelizumab. I politely reminded him that it is accepted that MRI is generally only good for c. 50% of things. They have to take your word on it. I asked if he’d like to try living in my body for a few days. no? Then, believe me, doctor, it is unpleasant. The drug, please 🙂

It is a bloody great game. You have to learn it and play it. It shouldn’t be but it is. Sadly.


wobbleone
3 months ago

@dominics
I understand all that and I will work at it.
Most people who seem ineligible for the drugs have not had a firm diagnosis. I have a firm diagnosis of RRMS , I’m told I’ve had it at least 10 yrs as born out by my past scans and symptoms logged in my medical records that apparently now correspond and yet … NO you don’t meet the criteria for DMT. … that is what confuses me.
I tell the MS nurses I’m not eligible .. they snap at me and say “ of course you are you have RRMS”.. the neurologist says no, then the nurses backtrack and say oh well you don’t want one of the lower efficacy drugs with all their side effects but then in the next breath say that I have to work through from that stage when I do start …🙄
… and everyone around me says “it’s great you have a diagnosis and can start treatment”.. yes isn’t it 😔

From what I gather :-
The neurologists were hoping that the lower efficacy drugs would become obsolete as the newer ones came out so they would be able to start at the higher efficacy ones but this isn’t the case, which in one way is good because they work for and suit a lot of people, however a lot of consultants I feel are holding back on this basis.


rmdaniels
3 months ago

@dominics. @johnjohnsjohns
After this relapse & reading the two articles (and using the comparison tool I the article, thanks @johnjohnsjohns) I’ve determined a call to my doctor is in order to try a stronger class of drug. This is my second relapse this year. Thank you all for your commitments to this site. It’s made such a difference in my MS journey!


dominics
3 months ago

@ettlerahs


strictlysoca
3 months ago

https://multiple-sclerosis-research.org/2019/06/treat-early-and-effectively/

Hey @domincs did you see this yet. Mouse doctor suggested in the comments that a freedom of information act request to all the prescribing centres might be a good way to shake up the neurologists still prescribing on the wait and see way.

This could be one for your mind like a steel trap. maybe if you had a go and then shared the “how to “with us all. I’d definitely do one to my centre – Militant MSers unite you have nothing to lose but your chains and a world to gain (as someone once said🤓)

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