Last reply 4 days ago
No changes on MRI

Good news is MRI shows no interval changes since last MRI. Neurologists is suggesting this means there is no compelling reason to start dmt. Whats everyones opinion on this advice. Cis since 2015, diagnosed rrms 2019

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robean
1 week ago

Second opinion! There is evidence that shows damage may still be happening which isn’t visible on MRI which leads to disease progression. Lots of research suggests the earlier you start a DMT the better so I would definitely be questioning this and pushing for a second opinion of a neurologist who is an MS specialist!


maureena
1 week ago

He is an ms specialist but maybe I need to have another appointment to talk it through


robean
1 week ago

Ah that’s good! Do some reading online and see what you think! My neurologist pretty much left the choice about treatment to me, personally I’m more scared of the risk of relapses than being on a DMT so decided to go for treatment but I can see why people also choose not to, especially when they are well and not having symptoms or new relapses!


seanachai
5 days ago

Hi Maureena

It sounds like you might be on the good end of the spectrum in the short-term or medium-term with respect to relapses or serious activity….. which can mean nothing else happens ever, or for a long long time..but equally it does not rule out MS activity that is undetectable on the “standard” MRIs…..

One of the frustrating things with MS and particularly RRMS is that is seems that most people converge in the same place in 15-20 yrs… which means you might see nada for 10-12 years and then the relapses or symptoms start arriving like buses….

In my personal opinion based on the research I have seen, DMTs really only provide a solution for people who have relapses regularly and so their quality of life and risk of damage is delayed so to speak, there is no evidence that DMTs stop MS… so its worth bearing that in mind, and that is most likely why you have not been put on DMTs… why risk the negative sie of DMTs when you have no real concern…. lots of people believe getting on DMT regardless, I don’t personally subscribe to that.. horses for courses ….

If you can afford it going forward, it is probably worth trying to get on the strongest MRIs possible, minimum 3T… there are 7T, which might mean paying private… however not sure 7T is available in UK or on NHS even private for that matter….3T definitely is… the norm is usually 1.5T these days

just think of it in simple terms as pixels on a camera picture… the higher the “T” the more resolution and the more activity they can see in the brain….

All that said, I think your in a good place regardless… but do consider your next choices… it sounds like DMT might be a bit early but that is just MY opinion, consider alternative treatment and therapy choices… stay healthy do all the usual good MS stuff… diet, vitamins, exercise, low stress etc… winning the lottery helps also 🙂


farmacista
5 days ago

Hi,
Out of interest, did they scan your head and spine, or just your head?


lisa_morghan
5 days ago

Hi sweetheart im Lisa and thats great news !!! Im not sure how your really doing cuz never met !!! But keep on whats working stay positive we are with you !!!


maureena
5 days ago

Thankyou for all your replys. It’s a difficult one but think I’m thinking along same lines as you @seanacai , I’ll spk with ms nurse on Wednesday and get her thoughts . @farmacista I just got head MRI this time, I had one lesion on spine on last mri. @lisa_morghan IM Doing ok at the minute think fatigue is my worst symptom but I’m managing it. I’m going to drop some hours at work and waiting on access to work calling to see if I can get help with taxi to work.


itsmewithms
5 days ago

There are two lines of thought on DMTs as I just put in the last response I entered 😉 one is the “escalation” approach where you don’t treat or use the lowest strength treatment to see if it works and only escalate if it fails. The issue is that when it fails you often don’t get back that utility…that is if an attack gives you foot drop or vision issues you may be left with them your entire life.

The other approach is more aggressive and tries to prevent any impact. They would prescribe the strongest defense on the front end instead of chasing MS they would block it.

Most Neuros are still “old school” so you need to determine what you are comfortable with and try to find a Neuro that supports. There are some You Tube videos describing the various options and approaches but Dr Boster is the one I have been following most and like his coverage of the various options and issues that we can experience.

While most of my lesions on my brain I also have some on my spine. They didn’t realize they were accruing there until one time I had an obvious attack (gait/stability impacted) and the MRI showed no brain activity so they added more MRIs until they found it. Apparently a spinal lesion has more impact on function than a brain lesion so keep an eye on those. Also sleep and stress are big impacters on MS so taking care of yourself, whatever it takes, will help allot. The Drs also recommend a “heart healthy” diet but admit that is a general piece of advice they give to all and there isn’t a specific “MS Diet” that they endorse although many on this forum have found benefits from various approaches. You can search any of the DMTs or discussions in this forum using the little magnifying glass in the upper left. I have found that very helpful 😉


maureena
5 days ago

Thankyou @itsmewithms


farmacista
4 days ago

I only had my DMT (Tecfidera) started after my neurologist discovered damage to my spinal cord, and for some reason they had been doing follow up scans only to my head. When I queried this with my MS nurse back in September, she referred back to another neurologist (mine has since left and not been replaced) and another MRI appointment appeared to have my spine scanned. When the nurse checked back, she couldn’t even see why the scan had been changed from head and spine to head only…
I chose Tecfidera as it suited my lifestyle and doesn’t interfere with work/life and I have been lucky in having very few problems with it. Good luck! 😊

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