Last reply 2 months ago
Help please – make your opinion heard

HI.

I have been asked to write a blog post, by a professor of neurology in the UK, for a site that has a far more medical/pharma audience. And the odd nerdy patient like me 😉

I am interested in your diagnosis experience, specifically about the help you did or didn’t get choosing a DMT. Nothing you say here will be attributable to an individual. Anonymity is key.

Specifically: I am interested to learn how much help and direction you felt was given to you.

I am not interested in what you think your doctor(s), nurses or drug companies thought they were doing but how you felt about the choice when you had some time to reflect.

It is my contention that when someone is newly diagnosed it is a pretty overwhelming experience. Shock, disbelief, fear, denial, the hospital/clinical/medical environment that you are thrust into are all suddenly entirely normal.

Amongst all that, someone tells you that you really ought to be taking a long term, quite a powerful drug many with terrifying sounding side effects etc. Forever!!! That’d shit me up! It did, but I am blunted by 26y and existing on the periphery of ‘that’ world already – personal and professional reasons.

SO: answer 1 or answer all, I am just interested in how you feel about it. The questions below are guides to think about. It is how you felt and why you felt that way that is of interest.

– did you feel you were given enough guidance towards a drug?
– did you feel like you were expected to choose one?
– were you just told you’d have to go onto ‘X’?
– were you told why it was so important?
– were the potential risks explained and put in context for you?
– how do you feel the answers were pitched to you? At, above or below the level you felt comfortable with?

Many many thanks, I appreciate any time and effort that you make to help me and the wider patient community.

Please feel free to post here or for additional privacy email [email protected] (this is an email I have set up, no one else sees it)

It will take a month or two and I will post the link when it is published. I’ll reiterate – no one will be named.

Best,

Dominic

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vixen
3 months ago

@dominics, this is a very worthy source of research, great that you’ve been asked to do it. I am in the highlands at the mo with intermittent email, so happy to email when home. Nice one 🙂


dominics
3 months ago

@vixen Pleasure – no rush. I have pre-conceived notions – I want a better set of responses from people to challenge them. So so much has changed these days.

Patient involvement, drugs, approaches, research advances and so on.

Best,

Dominic


rea
3 months ago

Hi Dominic,
I will post my experiences for you after my next neuro appointment.
Just waiting to see if they want to put me back on DMT after recent relapses, when diagnosed as SPMS 4 yrs ago. Will be interesting to compare then, (9yrs ago) and now.
Regards
Serena


mamawals
3 months ago

– did you feel you were given enough guidance towards a drug?
Yes, I was given a couple choices.

– did you feel like you were expected to choose one?
Yes.

– were you just told you’d have to go onto ‘X’?
No.

– were you told why it was so important?
Not really but I have MS!

– were the potential risks explained and put in context for you?
No. I’m in the US and went on Tysabri. I was expected to choose between Tysabri and Ocrevus, basically look them up on my own. Then once I chose Tysabri, Biogen sent me a bunch of info about risk.

– how do you feel the answers were pitched to you? At, above or below the level you felt comfortable with?
At a level I felt comfortable with.


watsoncraig
3 months ago

Having PPMS I was not told about any drugs as there were none for PPMS. There is now O (which may work to slow down the progression) but for us PPMSrs NICE and the SMC have said “Not on the NHS you can’t” but if your pockets are deep you can try


dominics
3 months ago

@watsoncraig If you have found 80k down the back of the sofa you can get HSCT at the London Bridge clinic… Package deal apparently.


dominics
3 months ago

.


dominics
2 months ago

Some great replies to the email as well, thank you. Please keep them coming in.

What iam learning so far is the way the process is handled differs wildly. From country to country and also within a country.

Keep it coming.

Thank you.

Dom


rmdaniels
2 months ago

I have RRMS, diagnosed in 2019. I was given a lot of information about DMTs when diagnosed. I was pleased that I was given time & information about something so important. I was first introduced to DMT delivery methods; injection, infusion and oral. Once I thought about the method I preferred, I was asked to narrow down to the drugs available for that delivery method. I have been pleased with my choice so far.


dominics
2 months ago

I’m drafting the article now. Do keep the suggestions coming in. I didn’t really appreciate quite how different the experiences – your perceptions of them – differ.


cammo
2 months ago

@dominics My original neurologist (have since moved onto someone I trust a little more) simply gave me a bunch of drug company propoganda told me to read it and pick one. This was in the same consultation where I was informed that I have MS.
There was no professional advice given or any insight as to which one might be best for my stage of disease activity… just pick one.
I subsequently discovered a few month after “choosing one” that the drug information wasn’t even complete… there were other drugs that I could of selected but I imagine he didnt have the advertising pamphlets for.
I felt a little pigeonholed.
I was processing the fact that I had MS at the same time as trying to make a decision on which drug I should take for the remainder of my life.
Needless to say I ended up just choosing the one that didnt involve regular injections… the infusion medications were not in the propoganda pack he gave me.
I felt that a neurologists service were not required. I could have read the radiology report which said I had MS and I could have just seen a GP for a prescription. There was absolutely no neurological expertise provided.
Therefore I changed Neurologist.

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