Did you have a say in your treatment?

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Patients Multiple sclerosis

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Posted on
Good advisor

Hey guys long time no see. I have been trying to cope with some really hard stuff, but I am feeling a bit better now.

I was wondering the other day... Did you have a say in deciding your treatment? 

I feel like doctors only tell us what will 'cure' us, but never try to give us the chance to understand by ourselves what are we going to take and if we do want that or another thing...

Am I the only one who feels this way? 

Beginning of the discussion - 09/02/2016

Did you have a say in your treatment?


Posted on

Really good question Jensen12, I would have to say that in the moment of my diagnosis I didn't, I couldn't believe it, so I let the doctor decide everything for me. But after having some side effects I looked up more info about the treatments and started talking to my doctor in order to have a treatment that fited me better.

Did you have a say in your treatment?

• Community manager
Posted on
Good advisor

anyone else wants to share?

Did you have a say in your treatment?


Posted on

My sister was diagnosed with secondary progressive ms and i dont think she has had a choice in her treatment, it was her doctor who made the decision and didn't really explain what the treatment was about. So I see she is not the only one!

Did you have a say in your treatment?


Posted on

@Jensen12 @ChristyT @stephanyJ I think for me, at the beginning when I was first diagnosed I didn't know anything about MS and it was all so overwhelming and I was in a sort of shock that I just took and did whatever the doctor told me. I think now having had MS for many years and being a part of a MS community where I can read others' experiences I'm "wiser" and know more about treatment options and possible side effects. I feel now I'm more educated about my disease so I can question or negotiate with my doctor if I don't agree with an aspect of my treatment.

Did you have a say in your treatment?


Posted on

@Jensen12 @ladymary I still kind of feel that I don't really have a say. When I bring something up like a question or something I've heard I feel like the doctor kind of brushes it off and I end up doing or taking what he prescribes. Of course I'm going to do what he says as he's the one with the medical knowlege, but sometimes I do feel brushed off a bit.

Did you have a say in your treatment?

• Community manager
Posted on

@stephanyJ Hello stephanyJ, thank you for reviving this discussion, and thank you @ladymary and @nameless for participating! Let me see what some of our members who may not have seen this discussion yet think!

Hello members, I hope you're doing well. What do you think? Have you had a say in your treatment choices? If you have, how did you go about it?

@Amy1977@JuWall76@Vwelwood@Essben@Kelly17@Katniss@Tinaaholmes33@Scottydog@Cazbarr57@AdeleCB@Sqeakie11@Loobyloo@Leesa71@ednalittle@Ashleen@annconway75@MSfamily@Aj2406‍ 

Take care,
Courtney

Did you have a say in your treatment?


Posted on

I had a relapse just over 3 years ago and thats how i found out i had ms, thank fully not had one since, consultant give me a choice, alamtusimab or tysabri, i choose tysabri as it suited me better but after over 2 years i had to come off it as my jc was at 3.85, automatically he put me on fingolimod with no input from me, but personally i dont think this drug suits me but thats another story

Did you have a say in your treatment?


Posted on
Good advisor

Although only formally diagnosed with "Benign" MS in March 2013, both myself (I'm a retired RGN) and my Specialist MS Nurse believe it started in 1978. This is when I initially saw a Neurologist privately (couldn't wait 9 months with agonising, unremitting facial pain).  He queried MS because during his neurological exam, found (a personally unaware of) a right sided weakness (arm & leg) but as my presenting problem was 1 sided facial pain, diagnosed this as trigeminal neuralgia.  When I returned to him, a few weeks later due to the pain "switching to the other side" of my face, the only procedure he suggested was severing the nerve where it entered my brain!  1 of the downsides he explained was that side of my face may become paralysed!  Did NOT even consider this.  In those "early years" myself and MS Nurse believe this is when I had RRMS because between all of these intervening years, kept intermittently losing my colour vision, had bouts of horrific bilateral heel pain, sciatica etc etc.  Since 2013, have had no day or night without problematic MS symptoms but the last Neurologist I saw in July 2016 categorically stated I do NOT have "Progressive" MS - I simply have MS!  I have the most sympathetic, empathic GP in the world, although he knows/understands little about MS and I receive a telephone consultation every 6 months with my MS Nurse.  I consider myself extremely fortunate that I possess a historically comprehensive nursing/medical knowledge base and am basically "independent" although in the last 2 years, more frequently cannot drive as often due to worsened diplopia (2x vision), especially  when I have my increasingly prolonged and frequent "flares".  My MS Nurse is always a text +/or e-mail "away" but "self-manage" myself because the only treatment options involve pain/symptom control which I have always "tweaked" as/when necessary.  I think the best advice I can give anyone is to research and understand your own MS - everyone's MS is so individual, unique and if it's anything like my own - always, totally unpredictable!  I always try to keep an eye on what's happening "here" and always more than happy to be contacted!  Hope you all are staying as safe, well and happy as possible - none of us are on our own - we're all in this together x

Did you have a say in your treatment?


Posted on

@Yank34 That's fantastic that you're so "independent". Sometimes I get so overwhelmed trying to read about MS treatments and things and I sometimes have a hard time bringing it up to my doctor because I don't want to be a trouble. It sound like you have a great MS team too. 

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