- Home
- Share
- Forum
- Multiple sclerosis Forum
- Treatments for multiple sclerosis
- Did you have a say in your treatment?
Patients Multiple sclerosis
Did you have a say in your treatment?
- 108 views
- 10 times supported
- 11 comments
All comments
Go to the last commentUnregistered member
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.
Margarita_k
Community managerGood advisor
Margarita_k
Community manager
Last activity on 07/10/2020 at 11:39
Joined in 2016
1,195 comments posted | 88 in the Multiple sclerosis Forum
1 of their responses was helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Committed
-
Explorer
-
Evaluator
anyone else wants to share?
See the signature
Community Manager
stephanyJ
Good advisor
stephanyJ
Last activity on 15/12/2022 at 21:19
Joined in 2017
19 comments posted | 13 in the Multiple sclerosis Forum
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
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!
ladymary
Good advisor
ladymary
Last activity on 07/08/2023 at 21:39
Joined in 2017
36 comments posted | 27 in the Multiple sclerosis Forum
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
@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.
nameless
Good advisor
nameless
Last activity on 08/06/2023 at 11:50
Joined in 2017
19 comments posted | 18 in the Multiple sclerosis Forum
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
@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.
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 13/10/2022 at 16:47
Joined in 2020
1,280 comments posted | 58 in the Multiple sclerosis Forum
10 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Committed
-
Explorer
-
Evaluator
@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
See the signature
Courtney_J, Community Manager, Carenity UK
Scottydog
Scottydog
Last activity on 12/05/2021 at 19:48
Joined in 2020
4 comments posted | 4 in the Multiple sclerosis Forum
Rewards
-
Explorer
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
Yank34
AmbassadorGood advisor
Yank34
Ambassador
Last activity on 14/10/2024 at 13:34
Joined in 2015
291 comments posted | 59 in the Multiple sclerosis Forum
16 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Committed
-
Explorer
-
Evaluator
-
Friend
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
See the signature
Ann
nameless
Good advisor
nameless
Last activity on 08/06/2023 at 11:50
Joined in 2017
19 comments posted | 18 in the Multiple sclerosis Forum
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
@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.
Yank34
AmbassadorGood advisor
Yank34
Ambassador
Last activity on 14/10/2024 at 13:34
Joined in 2015
291 comments posted | 59 in the Multiple sclerosis Forum
16 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Committed
-
Explorer
-
Evaluator
-
Friend
@nameless I'm so, so sorry to hear that you get so overwhelmed trying to read about treatments (and things) and this extends to talking to your Dr about it! Do you not have a MS Specialist Nurse - if not, I think you are entitled to have one and personally think/hope you may feel a little more comfortable in talking to someone like this? Please, please feel free to talk to myself anytime!!!!! I am in the most fortunate position of living with MS for 42 years; 35 of these not knowing (acknowledging/in total denial) this was why I was experiencing, albeit intermittently, my multitudinous problems/symptoms! Now being 69 (but still possessing the heart of a child) and having such a long standing nursing/medical understanding plus probably having a form/type of MS where although for the past 7 years, no 24 hr period passes without my MonSter interfering with my physical, sensory, intellectual, emotional etc. functioning, remain "mobile" and independent (except have had to accept the "new me" after 2013 when my RRMS dramatically "changed"). I also, actually had 4 full days, following an Acupuncture/Reiki session, totally symptom-free maybe about 3-4 years ago! Prior to "lock-down", I usually saw my Acupuncture/Reiki Practitioner who has become part of my "extended family" every 3-4 weeks. MY 4 day "holiday from MS" has not yet been replicated but her treatments have always been more effective than literally anything else. Feel like I've gone on long enough! The most important point to this message is I'm here for you! I know what it feels like to be overwhelmed and have only very recently "escaped" from experiencing this! Please "talk" to me anytime, anywhere, anyhow x
See the signature
Ann
Give your opinion
Members are also commenting on...
Articles to discover...
04/10/2024 | Advice
Multiple sclerosis (MS) and sexual dysfunction: everything there is to know!
30/05/2024 | News
What are the benefits of herbal medicine for multiple sclerosis?
24/04/2024 | Testimonial
Multiple Sclerosis: “I am a warrior, and I will overcome this illness with love and positivity.”
19/05/2017 | Testimonial
23/03/2018 | News
13/06/2016 | News
02/10/2018 | Advice
Medication fact sheets - patient opinions...
Subscribe
You wish to be notified of new comments
Your subscription has been taken into account
Unregistered member
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?